Breast Cancer Again

[Alexandra]

Hey everyone, it's been a while.

 

In all my time on LS this must be the first time I ask something this personal and I have thought of creating a new ID but then I've decided there's little to be ashamed of or even hide from.

 

It's very new. We found out last night. My mother has cancer. They don't know what stage, how far along it is, what her prognosis is. All she had is a mammography, a biopsy and a result. They said they'll refer her to the surgeon and schedule her within two weeks at most.

 

It's hard to tell how long it/they (she sometimes says there may be several lumps and they did take 6 different needle biopsy samples) have been there, around a year. She's 57, diabetic, hypertensive, etc and has had one of the hardest most horrid lives you've ever heard of and now this.

 

Because of our life circumstances and her many illnesses she's more my child than she's my parent. This all feels like a slow motion nightmare.

 

I know I should educate myself and read the evident links breastcancer.org and so on and I have started to, but somehow it feels better to ask people one admires. The ones feeding my denial aside (all the "how certain is it?" or the "what are the odds that...?"), is the stage established through biopsy or only after the results of surgery? Should I try and get her to get another opinion regardless of the stage they label her as? Any advice on how to get her over the denial and the subconscious emotional blackmail into a headspace where she doesn't toy with the idea of not doing anything about it?

 

I have more questions than ever before and usually I hold the answers.

 

HR, LB and all the other lovely ladies out there battling this thing, much strength to you.

 

Thanks in advance to all answering and I do apologize for the doom and gloom tone, I've went through this text but I don't know how to fake light-heartedness for now, it's almost like treading that line between apparent normality and decisive inspiring strength around her saps it all.

[marlena]

To begin with, I am very sorry about your mother. You will be up against some hard times indeed but I am sure you will beat this somehow. Hopefully, you got it in time.

 

I do not blame you for feeling gloomy! Anyone would after finding this out about a loved one. I was touched by the protective feelings you have for your mother. She is very lucky to have you. What you have just learnt is shocking to say the least. It will take some time to adjust to the news.

 

I don't know much about breast cancer. Hopefully LB and Dazed and Confused will jump in and talk to you about it. All I can do from here is listen and keep my fingers crossed for your mum.

 

Marlena

[DazedandConfused66]

The ones feeding my denial aside (all the "how certain is it?" or the "what are the odds that...?"), is the stage established through biopsy or only after the results of surgery? Should I try and get her to get another opinion regardless of the stage they label her as? Any advice on how to get her over the denial and the subconscious emotional blackmail into a headspace where she doesn't toy with the idea of not doing anything about it?

 

Hi Alexandra,

 

You have my sincerest wishes for a successful treatment plan for your mother. As her support provider, I know you'll make a good patients advocate, which is really what she needs more than anything else at this stage.

 

A few answers to your questions:

 

1) Breastcancer.org is a great resource. Absorb it like a sponge, although much of it won't be relevant to you until she's a bit further in with her diagnoses and treatment plans.

 

2) Typically, the "stage" of breast cancer cannot be determined until after several steps: The biopsy tells them if it's a tumor and, if so, what kind. Then they'll likely do either a lumpectomy or, depending on her age and wishes, a masectomy right off. Lumpectomies are preferred as a breast conservation strategy but again, at her age, she may choose to just get the whole breast removed if the biopsy shows cancer. During that procedure, they will, again depending on the initial biopsy pathology reports, elect to do a sentinel node dissection. They find the sentinel node and either remove it or biopsy it directly. Visually, during surgery, the surgical oncologist can determine if the sentinel node has cancer cells in it. If it does, they will likely elect to remove a small "pad" of tissue under her arm. This pad contains numerous lymph nodes. These will get sent off to pathology for further review. After ALL the above (some steps may be skipped depending on first biopsy), they can assign a 'stage' for her cancer. My wife was diagnosed with stage 3A IDC.

 

The real difficulty with the above paragraph, as LB and others can certainly attest, is that you don't get this staging information all at once. You may if she's determined to have Stage 0 DCIS cancer. In that case, they can rule out a lot of things very fast. But each step I outlined basically builds another part of her total diagnosis and recommended treatment options. This is where getting a second opinion is difficult. Personally, I was fine with the first one as I spent a lot of time talking to other patients of our primary oncologist, checked references, etc. But if you are going to get a second opinion, I'd wait for the first biopsy pathology reports to come back...then take those to another doctor.

 

I have real empathy for the early stages of this. It's painful, frightening and outright nerve-wracking to wait it out weeks, or even months, before you know EXACTLY what you are facing and how you'll deal with it. Please know that even if I don't know you personally, you have my sincerest wishes for strength and clarity right now. Be a good advocate for your mother....she needs a clear mind thinking on her behalf more than anything else as this is a very trying and emotionally uncertain time for her.

 

3) Once you have a stage of diagnosis, you'll be presented with your treatment options post-surgery. They may involve more surgery (a masectomy after she's already had a lumpectomy, for example....once they've established her margins for the spread of the cancerous cell), another lumpectomy to excise more cancerous tissue, etc. They will also discuss chemo treatment, radiation, both and/or injunctive therapies such as ovarian oblation and drug therapies such as tamoxifen. So many different paths lie ahead it's difficult to list them all.

 

Finally, getting her over denial is something I've no real experience with personally. I will say, however, that the "cycle of grief" that every human goes thru has a stage called "denial" that is typically short. She may just be dealing with that stage on her way to Acceptance. Trying to rush her past that isn't going to help much.

 

Please ask any questions you want, either here or in LB's thread. I'm sure between all of us on the boards here we can answer many of them from a first-hand perspective.

 

Good luck and best wishes to your family.

[LucreziaBorgia]

1. is the stage established through biopsy or only after the results of surgery?

2. Should I try and get her to get another opinion regardless of the stage they label her as?

3. Any advice on how to get her over the denial and the subconscious emotional blackmail into a headspace where she doesn't toy with the idea of not doing anything about it?

 

 

I'm sorry to hear this, Alex.

 

1. I didn't get my stage until the pathology report came back the week after my surgery. They really don't know exactly how big the tumor is until they take it out and measure it. Same with the lymph nodes. She will get a ballpark stage, but the doctor will be hesitant to say anything until the path reports come back after her surgery.

 

2. Second opinions are always good. I didn't go with one in my case, because the doctors I have come well recommended both personally and professionally.

 

3. Time, and keeping her going to appointments. Don't stress how grave the situation is, or try to press on how serious it is in order to get her to take action. She knows that on some level. Part of the ugly thing you don't see inside a cancer patients head is guilt, and it often comes in the disguise of denial. I felt and still feel an enormous sense of guilt. Guilt over having to be taken care of, guilt over leaving a legacy of bills behind, guilt over being sick - and you know what happens? Those guilt feelings twist into black thoughts like... maybe if I just let it go and die or kill myself when the pain gets too bad, it will be cheaper and no one will have to take care of me. They see the pain that the people will have at being left behind as somewhat lesser than the perceived obligation and resentment that the cancer patient thinks that her caregivers have.

 

Her healthcare providers will give her lots of information, and resources to help her. Just be supportive. Listen to her rant. Don't be dismayed at her low times. It is frustrating, as my exH and family can tell you - you hit such extreme lows and that is simply part of the acceptance process. She will be angry. Sad. Frustrated. Manic with denial. Surround her with support, without trying to 'parent' her. It won't be easy. Its a real rollercoaster ride.

[Alexandra]

Whee that was a scare. All of my reply options were sending me to "You do not have enough privileges". I thought I was blocked again (had my days of warnings on sarcasm and the like and I did just today post something that may be misread as mean).

 

I just wanted to post and thank you three but especially D&C and LB for your replies.

 

That was tremendous help information wise.

 

I can't get out of parenting her. We're in a foreign country (that I've moved her to so that I can take care of her as she would have never survived on her own), she has absolutely no financial means and no support network at all (no friends, no people she keeps in contact with on regular basis) and she doesn't speak the language (or English for that matter, which is why I was even there for the biopsy translating her every cry of hurt).

 

What you're saying about the wait D&C, that sounds just like something that occurred to me within hours of finding out. Starting with yesterday till the day she leaves it will be a long wait. For the diagnosis, for the exact diagnosis, for the next procedure, for lab results and ultimately, even if she ever, against all odds gets a clean bill of health, for the next verdict. I know. I'm aware. And I also know I'll need a whole nutter approach. I can't anymore dismiss her and tell her what to do in detail as if she's 10, she needs will and strength coming from inside for her to beat this, she needs to do more than forcedly go through the motions.

 

I'm reading breastcancer.org. You're right, much of it makes frustratingly little sense with no stage defined but I'm understanding more.

 

In a sense her "no, it's my body and I should have never had the mammography and known, I don't want any surgery, I'd die faster, you can't tell me what to do" is just falling into familiar behavior patterns, she's been doing this for every problem she's ever had to face over the past few years, it's her way of deferring responsability to me without having to admit lack of control.

 

Point 3 is spot on LB, I know she feels guilt, there was enough of it over being kept and taken care of even before this, even more now. It's terrifying to think of, it breaks my heart but I can't show her a broken heart now, it's an admission of how this thing could beat us.

 

Sorry for rambling everyone, I'll try and get on the cheerful note faster but I may still have questions and it's a huge relief that I know I have you guys to turn to. Thank you.

[Alexandra]

We just got a call that they've scheduled her for tomorrow morning at a rather famous breast cancer center. That's all they said. It ought to be just an initial visit to my mind, but I presume if they know it's really bad they may as well admit her to the ward and even perform surgery tomorrow. Is that likely?

 

Needless to say she's in throws of alternative anger, down right refusal and cries of fear... Getting her to the appointment tomorrow won't be easy but I have noticed that me saying "I understand" or simply shutting up instead of pushing works. (For now, till the novelty wears off, probably;))

 

As I said I was just wondering if any of you knew what the probability of it being the surgery appointment not only the first communication appointment is.

[DazedandConfused66]

It's always possible, but highly unlikely. It's more likely that they are going to do a consult with the surgical oncologist who has seen her early biopsy pathology report. He (or she) may want to do another round of tests, do an MRI to see more of the tissue....or just a simple manual exam of her breasts and to feel her collarbone for signs of lymph node swelling. Most surgeons want to meet with the patient and describe the various options and procedure before scheduling anything. It's also possible they are transferring her care to a team of breast cancer specialists...that's how my wive's treatment went. We started with a general practioner, then an oncology expert, and then we met a whole team of breast cancer specialists, including our primary surgical oncologist who turned out to be a wonderful and caring doctor.

 

Then again, I'm basing this off my experiences with the USA healthcare system. You mentioned you are in Europe so things may be different there.

 

But, alas, most everything I've seen and heard about from other breast cancer patients has been of the variety I described earlier in the thread....it's a process. You build out your diagnoses over time, not usually a "all at once" kind of thing. And surgery, while it does come early in the process, doesn't happen until the patient has decided to have a full masectomy or breast conservation strategies (eg; lumpectomy).

 

Regardless, this is the part of the process that can be a rollercoaster....the constant jerking of your adrenaline levels up and down everytime you get pushed a few more feet into the process.

 

Good luck with your appointment !

[Alexandra]

Thank you so much for your answer. I read it right before we were leaving for the appointment and calmed me down in a sense.

 

What transpired from the appointment facts wise:

 

- They don't want her doing radio as her heart and lungs are in bad shape and her high blood pressure is a big issue. They scheduled her (almost without consent) for a full masectomy and then chemo.

- They are very worried that she may not survive the surgery. (either that or very Swedish, they reiterate these risks for everyone really)

- They think the ganglions in the left armpit are caught so they had another biopsy taken.

- There will be a team involved, her surgeon is a young, energetic, nice lady and the surgery is on the 5th of Dec.

- There are two tumors. The big one is 4.5 cm and the small one far smaller.

- At tactile examination it seems like the small one is growing from the big one.

 

What I took as better signs than I had pictured. These are the ones I need comments on if possible. Please tell me if I'm just exagerrating and they are not actually that good.

 

- The size of the tumors.

- The fact that the doctor didn't send her for an MRI, gynecologist exam, not any other place to check for cancer despite mom being convinced it's all over.

- The fact that they grow of each other. Am I overreading into this or is this a potential sign that it's not so spread out/invasive?

- The fact that the doc said with surgery she has a 90% chance at normal survival notwithstanding the rest of her problems.

- The fact that the doctor fervently encouraged us (and winked at me) to take a trip that we had scheduled for her around Christmas stating that it will be fine surgery wise in almost three weeks and that she needs it as chemo won't start till after that in January.

- The fact that the doctor performing the under arm biopsy said in his opinion from what he can feel and see it's not cancer but enlarged ganglions. (he added only the lab results can tell but I am grasping at straws.)

 

I know I am pestering you now but I am so relying on you guys for info and support now.... Thanks in advance.

[Alexandra]

Just thought I'd update you guys although I probably bored everyone to tears already.....

 

After a few days of hope it feels all gloomy again. Last night she called to say she found a third lump high on her chest above her breast and right beneath the collar bone. It seems extremely small and I guess there's a 1% chance it's not another tumor but from what I read it's worse to have it there and it may mean very bad news.

 

It also has a way of shattering any faith I had in this team of doctors since their hands were all over her days before and never went up another 2 centimeters. A full cat scan or full body MRI should be common practice for every cancer patient, how can they rely on people searching for lumps themselves?!?

[DazedandConfused66]

Hi Alexandra,

 

Let me start by saying that all this information coming at you at once is very difficult to process. It can be very overwhelming and I understand this totally.

 

It's also a "rollercoaster" ride right now as you will get good news and bad news all at the same time and have so many "what ifs" that it just overwhelms the senses. In the case of my wife, he had several "bad news" reports one after the other over the weeks it took to achieve a full diagnosis. I empathize with how you are feeling and want you to know that you have to, at some point, just learn to roll with the punches as it were and not let any ONE thing be the catalyst here.

 

So having said that, let me see if I can answer any of this for you.

 

- They don't want her doing radio as her heart and lungs are in bad shape and her high blood pressure is a big issue. They scheduled her (almost without consent) for a full masectomy and then chemo.

- They are very worried that she may not survive the surgery. (either that or very Swedish, they reiterate these risks for everyone really)

 

I'm surprised to hear this if you've not yet been given a "stage" to her cancer. There are several types of breast cancer. The worst you can have (well, it's all relative I guess) isn't IDC (Invasive Ductile Carcinoma...which is the most common of the 'garden variety' of breast cancer), but rather something called Inflammatory Breast Cancer. This is a very different animal and has several outward signs that the cancer has flared up, so it's faster to diagnose than stages 0-3 of DICS and IDC.

 

There is also stage 4 of IDC where the cancer has spread beyond the breasts and is located near the collarbone or other parts of the body. This is called Metastatic Breast Cancer, meaning it's spread already. They can determine Stage 4 cancer from the initial biopsy and manual exams usually, although they will often perform mutliple biospies aided by use of Sonogram, CAT scans and/or MRI's. Sometimes...given the patients health conditions, they will forego this and jump straight to Chemo as it's the only known way to slow the growth down to a halt, then excise the tumors AFTER chemo.

 

I'm not a doctor, I'm just telling you what I know and have learned by being part of this "family" of cancer patients. But I will say that given what you've shared....this sounds very much like they have already staged her at Stage 4. They should be able to give you this information if asked, however. I'd ask if in doubt....ask them directly if they have a stage diagnosis yet and whether they believe the tumors have metastasized and, if so, where else have they grown in her body.

 

- They think the ganglions in the left armpit are caught so they had another biopsy taken.

These can be, and usually are, just cysts. But the fact that they are under her arm is the same area where the bundle of lymph nodes are located. Typically, for a breast cancer diagnosis, they will first isolate the sentinel node, which is the first node of lymph nodes off her breast. They biopsy that or look at it under surgery to determine if it contains cancerous cells. The fact that they took a biposy under her arm could mean they targetted her sentinel node or other lymph nodes in that area.

 

- There are two tumors. The big one is 4.5 cm and the small one far smaller.

- At tactile examination it seems like the small one is growing from the big one.

Any tumor greater than 2cm, but less than 5cm, automatically puts her at least as Stage 2. That's one of the primary markers used in the staging process.

 

The fact that there is a secondary tumor COULD put her into Stage 3B classification, although other markers are usually necessary as well. Again...given what you know, they should be able to provide you with a stage classification by now. The staging system is a global scale...it was introduced to help all patients and doctors worldwide in discussing cases and effective treatments. Swedish influences notwithstanding, there likely is enough information available now for your primary oncologist to provide you with either a stage or the steps necessary before they can determine a stage. From a layman's perspective.....they are giving you enough info that I think they can give you a stage now. All that's missing is definite knowledge of lymph node involvement (if any) and the margins they'll know once they have done the masectomy. They are likely waiting on both of those....but again, you should ask.

 

- The size of the tumors.

See above.....tumors between 2.5cm and 5cm are considered well within norms for early-diagnoses of breast cancer. 5cm is about the length of a AA battery for comparison. But, depending on how close to surface of the skin it resides, it can go a long time unnoticed.

 

- The fact that the doctor didn't send her for an MRI, gynecologist exam, not any other place to check for cancer despite mom being convinced it's all over.

The MRI thing is very much a personal choice of doctor's. Your primary oncologist may, unfortunately, just think the symptoms and existing markers are too significant to even bother with it. In other words...it won't tell them more than they already know. In the USA, insurance companies won't often pay for MRI exams if other, cheaper methods of determination are available. And although there may be cancer elsewhere....that's what the chemo is for. Chemo is a systemic treatment....if there's cancer anywhere in her body, it attacks it. Her overall age and health may also be a contributing factor here.

 

- The fact that they grow of each other. Am I overreading into this or is this a potential sign that it's not so spread out/invasive?

Cancer is a very invasive type of disease. It can manifest itself aggressively locally, in just one small area, or spread out on the other side of the body. That's why keeping it out of the lymph nodes is so critical to long-term survival. Once in the "body's distribution system," it can go anywhere. It's also why chemo is such a staple....it attacks the whole body at once. So....not bad news that they are growing so closely together. But not really good news either. Just another marker for the whole diagnosis.

 

- The fact that the doctor fervently encouraged us (and winked at me) to take a trip that we had scheduled for her around Christmas stating that it will be fine surgery wise in almost three weeks and that she needs it as chemo won't start till after that in January.

I'm doubtful this had anything to do with your doctor's feelings about survival. Chemo is nasty stuff and it really wipes you out. This was more about trying to stock up on some good times/memories before the nasty treatment stuff wipes out her energy levels if you ask my opinion. He likely just wanted to ensure that you didn't let the cancer take over your sense of joy during the holidays. Lucretia and I discuss this quite a bit in her thread....cancer has a terrible tendancy to invade not just your body, but your lifestyle also. But it can only do that if you, the patient and the patients' support network, LET it do so. This is my biggest challenge and fight personally with my wife...keeping cancer OUT of where it has no power and doesn't belong. I can tell you that last Xmas was a challenge for all of us. My wife had already had her masectomy, was in middle of chemo, etc. It's easy to get down....and that's likely why are being encouraged to enjoy the time before the chemo kicks in. The masectomy is physically and emotionally challenging, but it has a finite period of recovery. Chemo is yucky for months.

 

- The fact that the doctor performing the under arm biopsy said in his opinion from what he can feel and see it's not cancer but enlarged ganglions. (he added only the lab results can tell but I am grasping at straws.)

Again, MOST of the time, enlarged ganglions and/or lymph nodes are from cysts, impacted sweat glands...any number of benign reasons. For cancer patients, however, they take on a more sinister form. Your doctor is just being cautious as he should it sounds like to me. The pathology results will give you the answer.

 

I know I am pestering you now but I am so relying on you guys for info and support now.... Thanks in advance.

You aren't pestering me. I was busy most of the weekend or I'd have answered you sooner as I know how hard it is to just sit and wait for answers. I've added your thread to my little "notifier" alert system I keep on Lucretia's as well. If you post again...I'll know and try to answer you.

 

Hang in there....this really is one of the toughest part of the battle....getting ready for it.

[Alexandra]

I can't thank you enough for answering and all the info and wisdom you provide, but if I could I would. This will be long.

 

On the facts front, I called the doctor about the third tumor and she agreed to immediately see her. We went over on Wednesday and she palpated it, marked it with a circle and said it needs a sample taken. She also said that her superiors (the head surgeon and the head oncologist) took her case and they would be talking to us from now on, that we were to meet them in a few hours. They couldn't book the biopsy ward for that day but assured us that even if the round marking is gone it will be easily found by the professionals at the biopsy ward.

 

Hours later the head surgeon and the head oncologist looking like they were signing a death condamnation entered the office and said that the tests came back her ganglions are caught, they no longer want to do surgery then chemo they want to start with chemo and that they need another more extensive biopsy from the big tumors to check her hormone receptors and whether it's invasive or not. Despite mom's plea for them to check her atrocious pains in the end of her spine so that it's not bone metastasis they dismissed that again and said it wouldn't matter.

 

The next day they did the extensive biopsy and then spent two hours between three doctors trying to locate the third since the marking was now erased. The needle mark looks now like they checked the completely wrong place.

 

On Wednesday it's the next meeting. I NEED them to at least have a stage then! All they said so far was "III or IV" well thanks a bunch, I knew that much myself. I also need to know if it's metastatic and if it's invasive. I need to know if the reason why they chemo it is that they think it's all over. I need a life prognosis. I know most of these, I know it's very bad if not terminal and I know she could beat it even if they say there is no hope but I need a place to start.

 

On the emotional front she is just as bad. Fluctuating between thinking she can beat it and saying she doesn't want to have chemo and wants to die.

 

At first I thought all I can do to help is carry on like nothing happened in my tone to her, discuss trivialities, have the usual exasperrated tone when she is nagging and generally fake normality. I thought that would give her strength, minimize it and help her cope. As weeks went by though I went back on that decision and realized there is no way to minimize it. There is no way to avoid it. Or make her snap out of self-pity cries or morbid thoughts.

 

All I can do is shut up, listen and let her do it because she doesn't mean the bleak, suicidal thoughts all the time but she needs to express them. I let her cry and wonder why it's happening to her and stop protesting that it happens to anyone. I let her say silly things like "It's my body, if I want to die I will" and not scream about it being selfish because I know she doesn't really want to die and because she needs to feel she has a choice. I even let her say it's my fault that she got cancer, it's all the times I've upset her. She loves me, that's just the anger and the rage talking and when they're gone she's stronger.

 

At the same time I can praise her for her strength and will to go on when she expresses those and hopefully use positive reinforcement to help her have that line of thought more often. It seems to be working so far. It makes her feel loved, cared for, it helps me know I am doing the right thing and will not have to struggle with having treated her badly when she goes and it is even bringing us closer together by leaps and bounds.

 

Not an option in my case since I'm in charge of providing all the care for her and she's dependent on me but even if she were young, healthy and independent I wouldn't let her go to any appointment be it with the doctor, the biopsy ward or the lab alone

 

I'm also trying to do all of the info work I can for her. I can pass it on as a language issue, most of the resources are in English and she is not fluent in it. It's not though, it's saving her -when possible- from the grueling findings and from the heart jerking every bit of bad news brings and trying to dose that info when I give it to her. I can't control how much she reads online even if she understands it, I can't be there to stop her from throwing the book away when it just gets unbearable but what I can do is educate myself first, then break that info down into a tone she understands and give it to her when she's receptive.

[DazedandConfused66]

If I could start this reply with a hug thru the monitor, I would right now. I have great empathy for the frustration and challenges of dealing with early-stage cancer detection. It's just awful. There were times I would have to leave the procedure room where they were giving my wife biopsies or whatever, go into a stall in the mens room and just stand there and dig my nails of my hands into my sides to try and contain my desire to lash out and scream at someone. "Why" was very common word in my vocabulary back then. I understand and can sense your own emotions in this ordeal Alexandra, and I have great empathy for you.

 

But you are 100% right. You can't "halt" her fears. This is part of the process she has to go thru. She's in denial which is a major stage of grief for all humans. Anger and Bargaining are part of it as well. Sometimes it can be total denial, other times just partial. But it is perfectly natural. I was stuck on "Anger" for a long, long time. And so was my wife...with much of that initial anger causing her to lash out at me. I shared this with LB in her thread and I'll share it with you here as well. Cancer will cause so much fear on some days that she will lash out at anyone and anything in despair, particularly those who are closest to her. This is NORMAL....unfortunately, VERY normal. It doesn't make it any easier to be the recipient of this anger, but it's all the more reason to try and turn that frustration towards fighting the cancer instead. Cancer is an enemy and every ounce of your own emotional energy needs to be focused on eradicating it if you can....this is why the role of being a patient advocate is so important to her. You have to be the strength and rational thought that she can't be on some days. Eventually, she has to want to fight it as well....but sometimes, we all need good role models. That's your job. The fact that you are trying to get help gives me great encouragement that you CAN be this advocate. And that's my job for you (and LB) right now...to try and give you the support you need to help her. She's not going to be emotionally capable of driving you right now. You have to drive her until she is willing to fight this herself. And you can't force this.....she has to get there by listening to you (and others...but sounds like mostly you) tell her she CAN fight this.

 

Now as far as what the docs are telling you....yes, stage 3 or 4 sounds quite likely. The fact that it's in her ganglions is harsh...I was hoping that wasn't the case. My own wifes cancer got into her lymph nodes so could be anywhere in her body growing right now. But that is the very nature of chemo and radiation. These are systemic treatments. They will destroy the cancer cells (which grow much faster than healthy cells) anywhere in the body, all at once. They turn the body into a battleground and this is harsh, but it's a battleground you WANT to have versus just a losing battleground of letting the cancer have it's way inside of you.

 

What they are suggesting isn't that uncommon. Many patients are given chemo and/or radiation first in an effort to reduce the size of tumors (tumors grow because they are replicating...chemo prevents replication and/or causes them to shrink entirely as they are killed) and therefore reduce the amount of surgery necessary. It's also possible that they are concerned about her overall health and prognosis and believe that chemo is her best chance for survival right now. Chemo is harsh, very harsh, on the immune system, particularly for older patients or those with other health issues. They may look at her particular case and determine that between surgery and chemo, chemo is the better place to start as it attacks all the cancer simultaneously rather than just cutting her up here and there to try and stop it. Then, assuming she survives the chemo and it has the desired effect, they can go back in and remove the tumors that survive chemo.

 

But again...I'm not a doc. They are. I'm just telling you how'd I personally interpret their comments you've shared.

 

You mentioned checking her hormone receptors...is she pre or post menopausal? That part of your comment makes me believe they are considering having her start Tamoxifen or other estrogen-receptor therapies as an adjunct to her chemo. Again, this would be a systemic treatment...but it's typically reserved for pre-menopausal women I think. I'd have to do more research for you on that.

 

If I could give you one personal bit of advice it would be to seek out support groups for YOU. This is going to be a very difficult battle given her age, her emotional state and her other physical challenges. If you are going to be her advocate for this battle, you will need backup yourself. I foolishly tried being my wife's rock for months on my own. It took a toll on my health and on my ability to be there for my wife and family. I found a small group of other men who were also playing support roles for their wives/partners dealing with the battle and today I now help others in similar situations when I can. But it was soooo much better when I had someone to call on my really down days, or when my own fears needed to be voiced and I couldn't do so to my wife. I'll be here to play whatever role I can for you, but it would be helpful for you if you could find a support network locally also. Please let me know if I can help you locate one near you.

 

Ask anything you wish Alexandra....I'll answer to the best of my ability. Please know I'm thinking of you and you have my personal support for the challenges that face both of you. You've got a very tough battle ahead given what you've shared thus far. Keep up your strength....there will be days you need to carry both you and she. Count on that.

[Alexandra]

I thought I'd update with the result of yesterday...

 

We (or rather I, she was not in any state to remember all those terms) entered the hospital with the determination to find out exactly what this thing is called and what their plan is for beating it. To be fair, having read quite a bunch on breastcancer.org's forums I was expecting Stage 4, Invasive, Metastatic, Triple Negative and basically them saying they will only give it a shot with chemo but it's useless.

 

As compared to the above, what transpired I think was positive but as usual I can't be sure. They won't release an exact diagnosis yet, she still has to do a scintigrame and a full body catscan but the oncologist said he doesn't really think it's probable that it spread. The third one with the wrong needle mark returned no cancer and they insist that it was fine and in the right spot. It doesn't matter though because they changed their minds again. They will be doing the full masectomy on the 5th of Dec as originally planned and will be taking out the underarm as well. They said they can't tell me for sure till the other tests are done and it's all out but they treat it as Stage 2 for now. As a result of my bulldog like questions they also said that according to the last tests it's hormone positive. I couldn't ask which sort. They also seem to have given the case back to the initial surgeon who is a complete sweetheart.

 

I sat around half the night and put all the known facts and the papers in order and it looks like next Mon the scintigrame, the Wed after the meeting with the anesthesiologist, then the meeting with the head nurse on the ward, then the catscan and then the other Tuesday they check her in while the surgery is on Wednesday the 5th at 7 in the morning.

 

She's crushed. She hates the mere thought of the operation with such a passion it's heartbreaking. She's a combination between afraid that she will never wake up, afraid of the pain, afraid of waking up to not find it there, afraid of the drainage tube, afraid of it all and is manifesting that through lashing out at me. I was positive and uplifted yesterday, it sounded like there's hope, she was absolutely down and in tears all day. She claims that she will die in as long as without the surgery only she'll be in constant torment and they'll mutilate her.

 

Maybe I'm kidding myself again but doesn't the mere fact that they went back to the initial course of treatment and are willing to operate first sound like they believe it's maybe salvageable?

[Alexandra]

It's been longer than two months, I thought I'd give you guys an update.

 

Health wise many things have happened. She's been admitted and operated on the 5th of December. Despite their fears she survived the operation. I was in the surgery room with her up until they started cutting. The hospital experience with it was very strange, she was extremely high and positive after the operation. For days she was in a great mood laughing, moving, saying she's feeling better than ever. When the effects of the morphine and of the anesthetic wore off though it was another story. For many weeks she was in pain. Sometimes tremendous pain. Not from the cut as much as from the liquid collection and the drain tubes at first and then the extraction of liquid. Countless sleepless nights in the hospital as it got infected twice and they had to change antibiotics and try and keep the infection at bay. So far so good, knock on wood.

 

Much as we jumped for joy that her heart survived the operation though, two days after it we were in the emergency room with difficulties to breath and shoulders, arms and neck pain. After an initial mis diagnostic "Oh it's natural, you just had surgery, of course you heart all over" I managed to persuade them to take the enzymes test and sure enough she was in the middle of a heart attack. They medicated, kept her for a few days and then sent her home. A week later we were in the hospital again. Same story. Those were scary times, they said normally they would perform an angiography and balloon by-pass the vessel but being given the recent surgery they can not and will not.

 

With new medication it seems to have stabilized for now. Although they expect it to happen again any time.

 

In terms of cancer we met the oncologist. They have started hormonal therapy as well as preparing her for radio. They said they can't do chemo because of her heart and her diabetes but they will consider it down the road if they need to or in case of a reoccurrence. Apparently they now have a stage. II. The reason for that is that despite it being in 32 out of 34 nodes they think she has had it for many years, it looks like it's relatively slow moving and moderately invasive as well as it looks to them like it is nowhere else in the body -we're still waiting for the results from the liver- and that they cleaned everything with the surgery. I think they are counting on beating this thing, despite the huge odds, in fact it seems like the oncologist even changed the compassion filled attitude to the routine demeanor. Or maybe they just think the heart will get her first

 

Psychologically she is in a much better place, we have bought a house and moved her in with us which makes her feel far less alone and she's on anti-depressants which seem to work.

 

My fear right now is that we have started to live with this thing without panicking or thinking about death every day so it may well sneak up on us.... And that realistically her chances are low but we can't help hoping....

 

Just to add to my plate, my ex husband was just diagnosed with malignant melanoma. A misjudged patch of skin on his calf that was wrongly analyzed in 2001 and now they have a 3 cm tumor in his groin.

 

That's the update, I do hope you all have better news.

[LucreziaBorgia]

Man, your mother must have enormous strength to get through all of this. I can't imagine what she must be going through - what all of you are going through. I hope that each day will bring a brighter prognosis for her, and that your exH will be able to get through his experience as well.

[littlekitty]

Alexandra. What a lot to cope with.

 

I hope your mother improves and stays strong, and that your exh is ok too.

 

Try to stay strong and positive as much as possible.

 

Best wishes.