Caregiver question on Her2+ but the wife refuses chemo.

Pherenn

This is a caregiver's question; can you help? What would you say to someone who rejected chemo against the doctor's instructions?

Please forgive the long post below:

Background: My 53 year old wife was previously diagnosed with Stage IIIB colon cancer (4 years ago); we did it all and got through it. We did chemo and saw how horrendous it was for my lady. Now, she was diagnosed with Stage I BC, with the Her2+ gene. After surgery, the doctors have told us its a "no brainer," she has to do chemo or statistically it is likely to move to stage IV inoperable cancer. She has a family history of breast cancer and her mother did a mastectomy but no chemo. It did not come back for her mother.

Belief system: My wife believes in holistic healing only; she is a vegan, a tree hugger; no smoking, no drinking, no sugar, no glucose, no gluten, etc., etc. Yet, this is her second go around. She is adamant she will not do chemo again. When we had colon cancer, our bout with 6 mos of Folfox chemo was horrible... the anti-emetics made her nauseous. The Port became infected and had to be replaced, everything that could go wrong did, including peripheral neuropathy for over a year.

Latest issue: She was diagnosed with invasive ductal carcinoma in both breasts, Stage I and they just did a double mastectomy. The Wife has decided not to do chemo. She wants her life back and control of her body.

I love my wife passionately; I've known her >25 years. I can't be without her and the Doctor is equally adamant My beautiful lady "must" undergo chemo. My wife's response: "No way."

I never thought I would write on one of these forums; if I am posting in the wrong area, I apologize, but I don't know where to turn for support. I contacted the American Red Cross, they advised they don't help patients, only research. WTF? I raised thousands of dollars for them in the past, and they don't even have a support system for patients? Nuts. So I am turning to the BreastCancer.Org society.

My emotional pleas to my wife are not listened to: When we had cancer previously, the chemo was horrible. She KNOWS what it was like and now, will not subject her body to it again. I am crying my eyes out writing his to this community, so if my verbiage is improper or incoherent, or if I am posting in the wrong place, or should not be posting this at all, again, I apologize, but I am at a complete loss of where to turn to or look for information.

My wife truly believes diet, food additives, wheat grass and vitamin supplements will resolve any future issues of cancer recurrence. The doctor(s) response (Cleveland Clinic in FL and Memorial Hospital in Florida, both top of the line cancer centers) is start chemo immediately. She's refused. I tried the full court press with her mom, her family and my family in an intervention, all to no avail. We have full insurance for the costs and can financially stand losing her portion of the family income for a few months, so finances are not the issue.

How do I convince her to follow her Doctor's instructions? What would you, our cancer survivors, tell her to convince her there is no alternative BUT to do it. Or am I mistaken (and the Doctors) and not doing chemo is indeed an option?

Any ideas you have would be greatly appreciated.

Thanks.

A wayward and lost caregiver... just trying his best.

NEW UPDATE: 2/23/18: I have just been informed she is triple positive: HER2+ ER+ and PR+; does this make a difference in your recommendations?

We are supposed to meet the Onc next week for "chemo orientation," and the following day to meet the Plastic Reconstruction Surgeon (AT A DIFFERENT hospital). The ONC does not know Wife won't do chemo. The plastic surgeon at the other hospital is preparing for reconstruction because wife is not doing chemo. The Plastic surgeon won't do reconstruction if the wife does chemo.

The Onc is sending wife to chemo orientation because wife has not told the Onc, she is not doing chemo. So, essentially, she is withholding info from both docs. She wants the reconstruction before she even "considers" doing chemo (which she vacillates and says she will not do). The Onc wants a three (3) month cycle.

Wow, what a nightmare.

Rambros

maybe see if the doctor would prescribe herceptin without any chemo? Good luck to you and your wife

DATNY

She could try it and if the effects are too bad she can always quit. I had taxotere and carboplatin (commonly recommended for Her2+) in addition to herceptin and perjeta (which is not chemo, but targeted therapy) and did ok, no major side effects, like many other ladies with this particular chemo report on this forum. Look for TCHP threads on this site and you'll see that this chemo cocktail is very well tolerated.

Pherenn

Thank you for your prompt reply: However I am a bit confused: Are you advising she should indeed skip chemo?

beauz

based on my little knowledge of HER2+BC, it's a very aggressive type but has a very effective treatment due to herceptin and perjeta. Vegan diet obviously has not helped your wife much in terms of cancer recurrence. What kind of chemo did her doctors suggest? She should give it a go because of HER2+. She had a bad time with previous chemo. She may not react to new chemo as badly. You are doing your best, but please take it easy.

MaggieCat

Pherenn - Wish I could make things different for both you and your wife. Colon cancer treatment, wow... and only 4 years ago.. and now this, BC in both breast. You don't say if the BC has any hormone component - meaning you've said Her2+ ...is it either Er+/Pr+ or Er+/Pr-? ...makes a difference in the "targeted" and/or "chemo" calculus. .... and yes this makes a difference in personal treatment choices... Maggie

Tess111

First, I want to say, how sorry I am that you find yourself here. I totally get your wife's desire to not do chemo again. I hope that I never again have to make the choice that she is now making.

Let's talk about what the good news is in her situation is. The good news is:

• 1. She had her mastectomy to get rid of the cancer that the doctors can see. That is a good thing.
• 2.You say that it is stage I. That hopefully means it did not travel to her lymph nodes.
• 3.Thanks to her vegan and tree hugging tendencies , it sounds like she is maintaining a healthy diet and that is also a good thing.

Now, for the not so good news.

• 1. Her breast cancer is Her2 amplified.

The problem with being Her2 amplified is that it makes the cancer more aggressive. I am not a health professional or an expert in Her2 amplified cancer, but I picture it like this. A little guy with a bull horn yelling to the cancer cells, "Fire! Fire! We need more cells, we need more cells." So, because of this aggressiveness, there is a greater chance that some of the cells may have broken off and gotten into the lymph or bloodstream. This is why her doctors are recommending Chemo for systemic treatment. They want the chemo to track down any rogue cells and kill them.

Chemo reminds me of a big bruiser kind of guy, who is not too bright. It looks for fast dividing cells like cancer, but it also sweeps up other fast dividing cells (hair, nails, etc.), which is why you get some pretty fearsome side effects. Kind of a bull in a china shop sort of effect.

Those of us who have been diagnosed with Her2 amplified breast cancer are lucky, because researchers have come up with targeted therapies that can look for those amplified cells specifically (they go right to the target!), so while there are side effects, and some are significant, they do not cause the carnage that chemo does. Herceptin and Perjeta are examples of targeted therapies that have been FDA approved for treating Her2 + Breast Cancer. Herceptin latches on to one part of the cell and Perjeta latches on to a different part of the cell.

Researchers believe that the chemo and targeted therapies work together synergistically, which is another reason why your wife's doctor is recommending Chemo. I know some researchers have questioned whether women with small tumors need both the chemo and the targeted therapies, and there may be an ongoing study or two to see if just the targeted therapies by themselves will work. Someone else on the boards may know more about that aspect. I think the jury is still out on this idea.

I do know that there are some women on the boards that have talked their doctors into only giving them Herceptin without the chemo. I don't know if anyone is getting Herceptin and Perjeta without the chemo, but it might be possible.

Because it had not yet been FDA approved for adjuvant therapy, my oncologist was only able to get 6 infusions of Perjeta approved by my insurance company. I felt lucky to get that. Now, like Herceptin, here in the US you can get a year of both Perjeta and Herceptin. I found the worst side effects of a year of Herceptin to be a runny nose, a little tiredness as the year went on, and some niggling bone pain. But it was a walk in the park compared to the chemo! There can be some loss of heart function and they have repeated Echocardiograms done during the year to monitor that.

The gold standard for treatment is chemo plus Herceptin and now, Perjeta. (And hormone therapy if your wife is hormone positive.) But if your wife is dead set against chemo, she may be able to do just Herceptin and/or Perjeta.

I wish both of you the best of luck, and that the two you will be dancing together on your 50th wedding anniversary.

Pherenn

In reply to the hormonal issue; yes, they advised she is hormone positive as well and want her to go on hormonal treatments for estrogen. Whatever this means... sorry, we are still on the learning curve about all this. I think they said the hormone treatments would be for 5 years but am completely unsure; there is just so much information to absorb and we have so little time to figure this out. For my wife, the bottom line is NO chemo. Does anyone have any statistics for mortality rates or survival rates for surviving Her2+ without chemo? Is this even a proper question?

ElaineTherese

Hi Pherenn!

I was also diagnosed with triple positive (ER+/PR+/HER2+) breast cancer. On the Triple Positive Board, one member -- deni1661 -- is part of a clinical trial in which she just received targeted therapy (Herceptin + Perjeta). She has had a positive outcome, so far. Herceptin and Perjeta are delivered intravenously, but they are not chemo. As far as survival rates.... Before Herceptin, only 40% of HER2+ patients were still alive after 5 years. After Herceptin, HER2+ patients do as well as other breast cancer survivors.

By the way, for someone who is Stage I like your wife, she will derive the greatest benefit from surgery. So, there's that. She would derive less benefit from chemo, targeted therapy, and hormonal therapy. But, I was Stage III -- I did "the works."

ddfair

So sorry your wife is in this position again. Perhaps she has reached her limit of what she can deal with treatment wise. It sounds like she has already been through a great deal indeed. Maybe when she has a bit more time to recover emotionally and physically from the mastectomy she will reconsider chemo. My husband has colon cancer and his oncologist said breast cancer chemo is far more arduous than colon cancer chemo. Since she had such a difficult time with folfox, she may not be able to endure anymore chemo. Again, I am so sorry.

Pherenn

Thanks Elaine: To add more in case you missed it, she already did the mastectomy. Now, the oncologist wants her to do chemo and hormonal treatment. Isn't it required to do Chemo as soon as possible prior to anything coming back? We did surgery Jan 5 and the Onc. told us 6 weeks, so that's where we are now. Wow, just wow. "As far as survival rates.... Before Herceptin, only 40% of HER2+ patients were still alive after 5 years." This is horrible. Only 40%? OMG. Can anyone point me to a study or authoritative source so I can show her the statistics on this treatment protocol?

stephincanada

Hi Pherenn,

You certainly are in a tough spot. Here's what I would do:

1. Get your hands on a copy of the film "Living Proof". It is a dramatization of the development of the drug Herceptin, made by Lifetime. (Try iTunes, your public library, the patient library at your hospital or buy a copy of the DVD from Ebay.) Herceptin has changed the natural course of HER2 disease. It has gone from being one of the most deadly forms of breast cancer to one of the most treatable. I have watched it four times and dissolve into a puddle of tears every single time because I feel so incredibly grateful to have the benefit of this drug. It is essentially an antidote, it is THAT effective. (If she likes to read, try "Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer" by Robert Bazell.)

2. Tell her she can take Taxol, which is one of the more tolerable taxanes. It is only 12 weeks long, or 84 days. She can keep her hair if she wears a cold cap during treatment. You mention that she is a "tree hugger"; tell her that Taxol is made from the bark of the Pacific Yew Tree, a natural element. (I know I am stretching it here, but desperate times call for desperate measures.)

3. Show her the results of the APT trial, which studied the effectiveness of just Taxol plus Herceptin. The 7 year disease free survival rate for people with hormone receptor positive disease and no affected nodes was a staggering 94.6%!!! http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15...

4. If she is hormone receptor positive and node negative, she can skip Perjeta. The APHINITY trial showed that she wouldn't derive any benefit from it. (But check with your doc on this.)

5. If you want to see what her likelihood of survival is without treatment, use the PREDICT calculator: http://www.predict.nhs.uk

84 days of chemo. One year of a drug that has minimal side effects. 95% survival rate. Paste these stats on a wall in your house.

Good luck. I sincerely hope she comes around...

Stephanie

ElaineTherese

That 40% figure includes women at all stages. Since your wife is stage I, this data may be more appropriate to her:

A 2008 study found that women with early-stage small tumors may have much to gain from aggressive treatment. Researchers at the M.D. Anderson Cancer Center reviewed data from 965 women treated between 1990 and 2002 who had tumors less than one centimeter in size. They also studied 350 patients from European institutions.

They found that after five years, 23 percent of women with very small HER2-positive tumors experienced a return of the cancer, compared to just 6 percent of similar women without HER2 disease. That finding indicates that even among women who catch their cancers early, the risk of recurrence is nearly three times greater if they test positive for HER2 than if they do not. None of the women in the study received Herceptin treatment.

https://www.sciencedaily.com/releases/2008/12/081212122937.htm

embmom

I know how your wife feels. I did chemo, surgery and radiation 10 years ago for triple negative breast cancer,stage 3b. It was awful, taxotere and carboplatin. I lost my hair, and at 54 I wasn’t sure it would come back. But I got thru it, worked the whole time. Four years later it came back to my brain. Craniotomy and stereotactic radiation. Felt like crap but got through it. August I was diagnosed with her2+ stage 2 breast cancer. It took me some time to come to terms with doing more chemo. I really did not want to go thru it again, especially losing my hair. I decided to take one day at a time,always leaving myself permission to say enough was enough. I finished the first 6 treatments, which were really hard, but again worked all thru it! About 5 weeks ago, I finished the hardest part of the treatment and just had my second mastectomy. I had a complete response to the chemo! I still take each day and each treatment as they come. I know and my family has known from the start that it is always my call when to say...enough! PS, I know you are a very supportive caregiver but you keep saying “we have cancer”, in reality only she does. She will be the one who suffers thru the treatment, as much as you will be there to hold her hand and listen to her. Good luck to you both. I hope she is able to make the decision that is right for her

BarbD

I'm no expert, but having a double mascteomy may be enough. Years ago (before the discovery of her2) you wouldn't need chemo if you opted to remove your breasts. I know several survivors who didn't have chemo. And if it was just stage 1 even more so. So I can't say that I totally disagree with her. I can tell you that taxtere and carboplatin which is what I was given , along with the herceptin, is not all that unbearable. Of my three week cycle I had 9 bad days, the worst being the weakness, rather than any other side affect. Losing my hair was not pleasant, but it's not the worst thing in the world. Perhaps she could try one treatment and see how she does before making up her mind she won't try it. It may not be nearly as bad as what she went through before. Just my two cents.

Pherenn

"PS, I know you are a very supportive caregiver but you keep saying "we have cancer", in reality only she does. She will be the one who suffers thru the treatment, as much as you will be there to hold her hand and listen to her."

Embmom: With all due respect I state we, as it is indeed "we." I changed her diapers, I stayed with her in the hospital, supported her financially, lost thousands of dollars in income, I drove everywhere as she had peripheral neuropathy, helped change her clothes, transported her to and from the hospital and worked from the chemo ward, cooked, cleaned, and dealt with her chemo fog. I stood by her daily nauseousness, and cleaned up after those incidents; I cleaned up after the nurse left when removing the pump, and stayed with her through 13 hours of surgery, praying. All this for six (6) months. So, singing to the tune of "Do you love me," I think to myself, "Chemo is 'we.'"

Please allow us to agree to disagree. Indeed, after a long term relationship measured in decades, it is my humble opinion it is harder on the caregivers... at least you guys get good meds

Germangirl16

Herceptin is a life saver and most people tolerate it very well. There is a protocol for stage 1 called chemo lite with the herceptin. I did it and had no side effects except for hair loss,, very doable. It is 12 weeks of lower dose taxol and herceptin. You can research it online, and discuss with your oncologist.

NotVeryBrave

Pherenn - I think that a cancer diagnosis definitely affects everyone in the family, some more profoundly than others. There is a difference between knowing that your loved one has a life threatening diagnosis and the feelings that surround that vs dealing with the aftermath of treatment in many practical ways.

I suspect that your wife is interested in saving both of you from all that is required. But in the end - it is her cancer and her choice. And it's very hard to be in your shoes.

I had TCHP and had a complete response - no cancer present when they did the surgery after chemo. It was very hard at times and thankfully it's fading into a bad memory. I'm glad I did it. And I hope to never have to do it again.

I wish you both the best in coming to decisions on this.

BarredOwl

Hi:

"Stage I" could be Stage IA or Stage IB, and covers a range of tumor sizes (less than or equal to 20 mm (2 cm) in greatest dimension), as well as two different lymph node statuses (N0 or N1mi). Accordingly, it covers a range of distant (metastatic) recurrence risks. It does not sound like you received a clear explanation of her estimated distant recurrence risk or how various treatments may reduce that risk.

The decision to elect or decline systemic treatment(s) entails a personalized risk/benefit analysis. Expert professional medical advice from a Medical Oncologist familiar with her case is needed to understand her risk/benefit profile and to make an informed decision.

I would encourage you to obtain copies of her complete pathology report (not some top-line summary in an on-line portal) and to arrange for an additional consultation with her Medical Oncologist and/or a second opinion Medical Oncologist at an independent institution (if time permits) to obtain additional discussion of things like:

--(a) her actual diagnosis, including actual tumor size and lymph node status;

--(b) recommended regimen (names of each drug included; how administered (e.g., order, intervals, length of time));

--(c) to the extent possible, estimates of distant (metastatic) recurrence risk without any drug treatments, versus (i) with the recommended chemotherapy plus HER2-targeted therapy regimen; (ii) with endocrine therapy alone; or (iii) with both (i) and (ii);

--(d) the nature and incidence of severe side effects of recommended treatments, and whether she may be at increased risk of certain side effects due to personal medical or family history (e.g., age, co-morbidities, prior treatment, etc.);

--(e) the time-frame for timely initiation of any recommended chemotherapy plus HER2-targeted therapy;

--(f) other concerns.

She should not hesitate to discuss her past experience of treatment and related concerns with her Medical Oncologist, who may be able to provide valuable input about differences in tolerability of any proposed regimen versus what she received before for colon cancer, and of possible improved supportive medications (e.g., anti-emetics).

===============================================================

Here is some general background info for you based on my layperson understanding:

Possible Sizes of Stage IA and Stage IB Tumors:

When a primary tumor has been identified in the breast, you may see one of these tumor size designations in the surgical pathology report, possibly preceded by a "p" indicating size based on surgical pathology (e.g., pT1).

T1 = Tumor ≤ 20 mm (2 cm) in greatest dimension

T1mi = Tumor ≤ 1 mm in greatest dimension

T1a = Tumor > 1 mm but ≤ 5 mm in greatest dimension

T1b = Tumor > 5 mm but ≤ 10 mm in greatest dimension

T1c = Tumor > 10 mm but ≤ 20 mm in greatest dimension

The above are size designations only--they are not the stage.

=====> You can see that "T1" is a broad size category, and includes tumors that size-wise are "T1mi", "T1a", T1b" or "T1c".

Stage I disease is either Stage IA or Stage IB:

Anatomic Stage under the TNM system considers tumor size ("T"), lymph node status ("N") and evidence of distant metastasis ("M").

If a "Stage I" tumor is "T1" in terms of size (including any of T1mi, T1a, T1b, or T1c) and there is no evidence of distant metastasis ("M0"), then whether the Anatomic Stage is Stage IA or Stage IB depends on the lymph node status (N0 or N1mi):

- Stage IA (pT1 N0 M0), if node-negative ("pN0")

OR

- Stage IB (pT1 N1mi M0), if there is a specific level of lymph node involvement (i.e., "pN1mi" = Micrometastases only (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm))

===> You can check her surgical pathology report for the above "Anatomic Stage" information or these particular "T" and "N" designations, and then be certain to confirm your understanding with her team.

Three Main Types of Drugs for Early Stage INVASIVE Breast Cancer:

With invasive breast cancer, such as invasive ductal carcinoma ("IDC"), if "systemic drug treatments" are considered or recommended, they may include one or more of:

-- (1) Chemotherapy (a single agent or combination of agents, such as doxorubicin, cyclophosphamide, docetaxel, carboplatin, paclitaxel);

-- (2) HER2-targeted Therapy for HER2-positive disease, such as trastuzumab (HERCEPTIN) and/or pertuzumab (PERJETA));

-- (3) Endocrine Therapy (also referred to as "anti-hormonal" therapy) for hormone receptor-positive (ER+ and/or PR+) disease, such as Tamoxifen (to block the action of estrogen on tumor cells) or an Aromatase Inhibitor ("AI") (to inhibit the production of estrogen).

Treatments for HER2-positive Early Stage INVASIVE Breast Cancer:

The main factors which impact distant recurrence risk profile and consideration of or recommendations for systemic treatments under consensus guidelines from NCCN include:

-- Tumor histology (e.g., ductal, lobular, other);

-- Hormone receptor status (estrogen receptor ("ER") and progesterone receptor ("PR"));

-- HER2 status;

--Tumor Size; and

--Lymph node status.

If considered or recommended, under current clinical consensus guidelines applicable to certain types of HER2-positive early stage invasive breast cancer, standard regimens include chemotherapy plus HER2-targeted therapy.

HER2-targeted therapy agents include trastuzumab (HERCEPTIN) and pertuzumab (PERJETA). However, pertuzumab is not always included. In light of the results of the APHINITY trial, pertuzumab was recently approved by FDA for adjuvant use (post-surgery) in early stage breast cancer in those considered at "high risk of recurrence."

The above factors can impact distant recurrence risk profile and the recommended regimen for HER2-positive invasive disease:

-- Those at higher distant recurrence risk may receive a recommendation for a more intensive regimen (e.g., a stronger chemotherapy combination and perhaps "dual" HER2 therapy (i.e., both trastuzumab and pertuzumab)).

-- Conversely, for those at relatively lower distant recurrence risk, a regimen of {paclitaxel plus trastuzumab} may be appropriate.

-- Other clinical and pathologic factors may be considered (e.g., age, grade, lymphovascular invasion, co-morbidities), as well as patient preferences.

-- Because the choice of specific regimen entails some exercise of clinical judgment, a second opinion can be helpful.

Those with hormone receptor-positive disease (ER+ and/or PR+) typically receive a recommendation for endocrine therapy (e.g., five years or Tamoxifen or an Aromatase Inhibitor, or some sequence of these).

There are threads here for those with triple-positive disease (ER+ PR+ HER2+), as well as other threads for those with smaller, node-negative tumors, and threads for specific regimens.

Best,

BarredOwl

Lemint

I'm so sorry. I hope your wife decides to try the chemo. I had the TCHP treatment 12/16 thru 3/17, 6 rounds. I worked the through the last 4 treatments. I did not lose my hair, I did cold caps. If she decides to do chemo then maybe you can look into it. No one could tell I was going through chemo. My hair thinned but I never lost it.

Pherenn

Germangirl1: Thanks for that info, I will check it out with the Onc next week.

BarredOwl: Thank you so much for that information, so what we have is: T1cM0N0 (1) Chemotherapy paclitaxel; (2) HER2-targeted Therapy for HER2-positive disease, HERCEPTIN) and (3) Endocrine Therapy Tamoxifen is what we have been told so far. However, this is only from the 1 hospital, the other hospital the wife is saying no chemo, lets get to reconstruction. On Weds is the chemo orientation, and Thurs is the reconstructive surgery at another hospital. Neither doctor knows what the wife will actually do, and she is not allowing the doctors to communicate with each other and withheld HIPAA exchange of info from each. However, based on the stats I see in this thread, and the stats as I understand them on the PREDICT calculator: http://www.predict.nhs.uk ; is she right? Her tumors were 1 CM. So once again: ER+ PR+ HER2+ Stage 1: It seems like my wife could be right, there is very little info showing likelihood of recurrence and perhaps she should not do chemo. Am I mistaken?

Tess111

Pherenn,

I was looking for papers relating to treatment/no treatment for Stage 1 T1c (like your wife), and so far, the only thing I can find is an abstract taken from a presentation at the 2015 San Antonio Breast Cancer Symposium.

I thought this might be helpful. I am adding a link to the abstract.

http://cancerres.aacrjournals.org/content/76/4_Supplement/PD5-02

You will see they have included overall survival at 7 years follow-up for T1c tumors with systemic treatment and without systemic treatment. This was from a retrospective study done in the Netherlands.

Best wishes,

Tess

Becs511

I am so sorry to hear about your wife and I totally understand. I had leukemia as a teenager in the mid 90's and had two years of 9 different chemotherapies. Chemos were much harsher then and anti-nausea meds for some reason don't work on teens. So when I was diagnosed with metastatic triple positive breast cancer, out of the gate at 33, I was just like might as well, just kill me now. However, it is amazing what the body can endure if there is a will to just keep going. I have found most of my treatments (to date), so much more tolerable now than when I was younger. I still work full-time, go out with friends, do volunteer work, and play with my soon to be 3 year old nephew!

I would suggest 4 things: 1) Have the oncologist go over the chemo side effects with her (not in a sugar coated way), but in it is probably better than you expect way. 2) Meet with the nurses who actually do the infusions who see the patients during chemo. They tend to develop strong bonds with their longer-term patients. They can talk to your wife about the patient experience and what they daily from a non-doctor perspective. They can be a lot more "understanding" 3) Talk with the medical center's social worker 4) Talk with the medical center's nutritionist (assuming they have one). The nutritionist will tell your wife that while her diet is healthy, she needs more to attack this and lifestyle factors alone will not help her survive.

BarredOwl

Hi Pherenn:

Because we are laypersons, all outside information from publications or posts here should be confirmed with her team.

I don't understand what you are saying about the second hospital. Has she met with a Medical Oncologist at the second hospital, and declined all systemic treatments from them or is she deferring consultation with a second Medical Oncologist (or possible treatments) until after reconstruction? Systemic therapies should begin timely within a certain time-frame from initial diagnosis and/or surgical treatment.

Re: "T1cM0N0" and "However, based on the stats I see in this thread, and the stats as I understand them on the PREDICT calculator . . . is she right? Her tumors were 1 CM. So once again: ER+ PR+ HER2+ Stage 1: It seems like my wife could be right, there is very little info showing likelihood of recurrence and perhaps she should not do chemo. Am I mistaken?"

"T1c" = Tumor > 10 mm but ≤ 20 mm in greatest dimension

"T1c" and exactly "1 CM" are not consistent.

"T1c" indicates that the largest tumor is greater than 1.0 cm (10 mm), but less than or equal to 2.0 cm (20 mm) in greatest dimension.

Please check the complete pathology report for the largest dimension of each tumor identified, and/or seek clarification.

In addition, I don't think you are interpreting the information from the abstract or PREDICT 2.0 correctly.

(1) THE PREDICT 2.0 tool does NOT provide estimates of "recurrence" risk (See below). It provides mortality information ("alive"). "Alive" includes some patients who are alive, but have suffered a distant recurrence (i.e., have incurable metastatic disease).

(2) The meeting abstract linked above relates to the APT trial at a median of 6.5 years of follow-up (http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.511). Importantly, the trial was a SINGLE ARM trial, with no untreated arm. ALL patients were assigned to receive paclitaxel plus trastuzumab. The reported outcomes are WITH such treatment. A substantial number of patients also received additional endocrine therapy.

Patients did well with treatment.

The abstract provides NO information re risk in untreated patients.

Note that results from meeting abstracts may be preliminary in nature. There may be caveats and limitations, but due to space limits, they cannot be addressed. For example, the abstract provides information re "Distribution by tumor size: 2% T1mi; 17% T1a; 30% T1b; 42% T1c, and 9% T2 ≤ 3 cm." Thus, while 42% of patients had T1c-sized tumors, and a small percentage (9%) had larger tumors, 49% of patients assessed at this point had smaller tumors (T1mi, T1a or T1b-sized tumors), which might tend to improve average outcome measures in this TREATED population.

Previously published results with a shorter median follow-up time of 4.0 years were reported here:

>>Tolaney (2015), "Adjuvant Paclitaxel and Trastuzumab for Node-Negative, HER2-Positive Breast Cancer"

>>Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion

>>PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1406281

In the above 2015 publication, "The median follow-up time was 4.0 years. . . " There was no untreated group. The findings represent outcomes WITH treatment. In addition, "Adjuvant hormonal therapy [e.g., Tamoxifen] was recommended for women with hormone-receptor–positive tumors after the completion of paclitaxel therapy."

Those with pending treatment decisions should be certain to discuss any outside information with their medical oncologist to ensure accurate understanding and applicability to their particular situation.

(3) Only a trained Medical Oncologist ("MO") familiar with the relevant medical literature and with access to your wife's complete pathology reports from all surgeries and biopsies is properly positioned to provide case-specific estimates of distant recurrence risk with or without treatment. Expert case-specific advice from her MO is required.

(4) Distant recurrence risk information does not mandate individual treatment decisions one way or the other. It is used to inform understanding of distant recurrence risk, and is used to estimate the potential benefits of treatment(s) (which are generally proportional to individual risk). Because individual "risk tolerances" may vary, even similarly situated patients may decide differently.

(5) Statistics based on groups of patients do not predict individual outcomes. However, the patient should understand what is known about the odds of distant recurrence without further treatment. They should also understand that if they were to suffer a distant (i.e., metastatic) recurrence, metastatic disease while treatable, is incurable, is likely to adversely impact quality of life, and may significantly shorten the life-span of a younger woman.

(6) The recommended treatments appear to be within the current standard of care.

(In general, a treatment is recommended when the potential absolute benefit of the treatment is judged by medical professionals to sufficiently outweigh the potential risk of severe adverse effects.)

PREDICT 2.0 Tool:

If you wish to use PREDICT, be sure to use Version 2.0. In addition, please be sure to enter accurate information, such as the actual tumor size in millimeters (e.g., if 1.2 cm = 12 mm). The actual size as reported in the pathology report (converted to mm as necessary) is what should be entered.

Be certain to confirm the accuracy of all inputs (e.g., tumor size, generation of regimen, etc), as well as accurate understanding of the outputs, and any caveats and limitations, with her Medical Oncologist as advised on the site:

>>> "Disclaimer: PREDICT can only provide a general guide to possible outcomes in any individual case. As we are all different, for the more complete picture in your case, you should speak to your own specialist. You may wish to print this page out and share it with your specialist."

You mentioned "tumors" suggesting more than one tumor was found. You may wish to inquire whether this tool is considered to be reasonably accurate if there are multiple tumor (e.g., based on the composition of the patient populations (and tumors) used to design and validate the tool).

Regarding the outputs, my layperson understanding is that Version 2.0 of the PREDICT tool appears to provide information regarding 5-year and 10-year Overall Survival, which is typically a type of mortality assessment (death). Overall survival benefit is important. However, it typically measures whether the study participants are alive or not at the specified time-point, not whether they have remained disease-free or recurrence-free. Those who are alive may be disease-free, or they may be living with metastatic disease, living with a loco-regional recurrence or new disease (i.e., a new primary in the same or contralateral breast).

Because of this, for patients with invasive breast cancer, consideration is also typically given to distant recurrence risk and the potential benefit of systemic treatments in reducing the risk of suffering a distant (metastatic) recurrence, which are NOT provided by PREDICT 2.0.

====> Please seek estimates of distant recurrence risk with or without various treatments from her Medical Oncologist per my prior post. Avoiding incurable distant (metastatic) recurrence is the primary purpose of the recommended paclitaxel plus trastuzumab regimen. Endocrine therapy (Tamoxifen) can further reduce the risk of distant recurrence.

========================

There is a thread for those on a paclitaxel (TAXOL) + trastuzumab (HERCEPTIN) regimen here:

https://community.breastcancer.org/forum/80/topics/849280?page=8

Note that HERCEPTIN and Tamoxifen are considered to be "targeted" agents (HERCEPTIN targets HER2 and the Tamoxifen targets the estrogen receptor). They are not chemotherapeutic agents. The only chemotherapeutic agent in the proposed regimen is paclitaxel (TAXOL).

BarredOwl

Pherenn

BarredOwl (and everyone else): I cannot tell you how much I appreciate all of your input!!! My wife is hiding the information from the two hospitals in play: Cleveland Clinic and Memorial Hospital in Florida. She has no coordination between facilities as she has not decided what to do. At one center, she is scheduled for Onc Orientation as the Onc advised it was a "no brainer to do," and at the other, she advised she is not doing chemo (and provided misinformation to the PS stating she does not need it per the other hospital) and is scheduled for reconstruction.

Yes, she had multiple tumors, the largest 10mm (1 cm), one had grown from original diagnosis (November 2017) at 7mm to 10mm by the time of the double mastectomy Jan 05, 2018). That was the reason for the double mastectomy. You mentioned I was misinterpreting the Predict tool. I too was looking at mortality rates, which seem to be just a few points in difference.

So to be clear, >50 <55 year old female, with history of BC with mother, with a double mastectomy BC 1cM0N0 Her2+Pr+ER+ IDC: Stage IIIB Colon cancer previous <5 years ago): Does anyone know of a report, test, calculator which can provide the statistical likelihood of surviving vs. mortality rates? With chemo and without chemo?

That is really what I am seeking: I need stats to convince her to do the chemo and the Onc doctor only told us 40% of surviving if she does not do it. This seems unrealistic based on what I am seeing.

Thank you all once again for your awesome help!

Icietla

Pherenn, do not mistake survival statistics for other than what they are. Patients who survive five years and a day count as having five-year survival.

BarredOwl

Hi Pherenn:

It is problematic that her care is not being coordinated and that you believe that she is "misleading" her plastic surgeon re the medical advice she has received. There are obvious patient safety concerns and there may be other implications. You can start by encouraging her to appropriately share medical records and to provide accurate information to all providers consistent with her patient responsibilities and to ensure a coherent treatment plan and timely care.

Re: "Does anyone know of a report, test, calculator which can provide the statistical likelihood of surviving vs. mortality rates? With chemo and without chemo?

You need professional advice from a Medical Oncologist with access to her records.

Additional comments (please confirm with her team):

Reports: It is not clear what medical literature (pT1b or pT1c) applies to your wife's case, because you have provided inconsistent information about tumor size (see below). In any event, patient laypersons like us are often not up on the latest research and/or may not be aware of conflicting studies. Do the findings apply in the individual case or not? Clinical trial publications can provide useful background information, but they are NOT a substitute for current, case-specific advice from an MO.

Tests: "Prognostic tests" such as OncotypeDX (for hormone receptor-postiive, HER2-negative only) and MammaPrint can provide information about distant recurrence risk in certain types of patients, but they have been largely validated in HER2-negative disease and are NOT recommended for use in HER2-positive disease under current clinical consensus guidelines from ASCO and NCCN. Treatment recommendations for HER2-positive disease are based on clinical and pathologic factors.

"Tools": PREDICT 2.0 is one on-line tool that accounts for HER2 status. It is based on patients with breast cancer only. As noted above, PREDICT 2.0 provides survival (mortality) information, not "recurrence" information. Please review the distinction above between being alive versus remaining disease-free.

The accuracy of the PREDICT 2.0 tool such as it is, is subject to the accuracy of the inputs. If the inputs are wrong (e.g., tumor size), the outputs will be wrong. This is one reason why the tool should be used in collaboration with a MO to ensure proper use and understanding, per the website disclaimer.

The info you provided about "TNM" assignment ("T1c") and actual tumor size (1.0 cm) is not consistent.

Here is what the AJCC 8th edition breast cancer staging says about "T1b" versus "T1c":

So, if the actual tumor size based on surgical pathology is 1.0 cm (10 mm), then the pathologic "T" assignment should be T1b, not T1c. Something is wrong here. And because the problem is at the threshold between T1b and T1c, it may be pertinent to the treatment advice received. Please seek clarification from her MO about actual tumor size and proper "T" assignment.

Re: "That is really what I am seeking: I need stats to convince her to do the chemo and the Onc doctor only told us 40% of surviving if she does not do it. This seems unrealistic based on what I am seeing."

You can support her by helping her to obtain clear and sufficient information to reach an informed decision, and to help you understand the basis for her decision.

If the medical advice received does not make sense to you and you would like your wife to obtain additional information in the interest of informed decision-making, then (a) request a follow-up appointment with the Medical Oncologist for additional questions and discussion, and/or (b) seek a second opinion. Share the information you found so they can address it.

The information you received may or may not be consistent with what you are seeing. There is not enough information here. What was the time-frame in years for "40% of surviving"? Surviving what? Breast cancer and/or colon cancer? You need to obtain clarification from the MO about the time-frame and the assumptions of any estimates and take notes. For example, is the estimate based on the breast cancer diagnosis alone? Does she face some separate continuing risk from the previous colon cancer? How should one think about that?

I recommend that you contact the MO ahead of any appointment and let them know you are interested in estimates of her distant recurrence risk based on the breast cancer, if possible. Distant metastatic recurrence precedes breast cancer mortality. So, the risk of distant recurrence is bigger than the risk of mortality in 5-year and 10-year time-frames.

During an appointment, ask the MO for an explanation of the rationale for systemic drug treatment. Many patients with node-negative (N0) disease do not understand that they are at some risk of distant (metastatic) recurrence. Negative nodes are a favorable prognostic finding. However, even with negative nodes, in the years prior to surgery, there is some possibility that some tumor cells broke away and traveled by the blood stream or lymph to distant sites, laying the foundation for distant recurrence. These cells already at distant sites represent a form of "micrometastatic spread" that is not detectable by lymph node biopsy or scans. Distant recurrence risk (NOT mortality risk) represents the risk that any cells at distant sites will grow, leading to incurable distant metastatic recurrence.

BarredOwl

NotVeryBrave

Regardless of which way your wife is leaning - it's very important to have ALL of the info presented clearly to you and ALL of the info shared with ALL of the providers. She can certainly decline further treatment of any kind once all the facts are known.

It's very easy to get completely overwhelmed with the numbers that are thrown around and all of the options that are presented. It's helpful to either take notes or request to record these conversations. A Nurse Navigator can sometimes help with follow up clarifications. Some doctors have emails that they share (and answer) or certain hours that they're available for phone discussions. I would check with the office or center.

And even though she has sought care at two reputable hospitals - having a good match of expertise AND personality goes a long way. Maybe it's a matter of finding the team that she "clicks" with.

gkbuser

Phereen, I think the best thing you can do is encourage her to be honest with both doctors and at least hear the info at chemo orientation. Reassure her that she is in control and in the end she has the final say so. Maybe she will agree to the anti hormonal therapy or maybe the oncologist can sugggest best plan for someone in her position that does not want chemo.

Pherenn

As mentioned earlier: you guys are awesome. Latest development: Plastic surgeon (PS) was notified of Onc's info, PS advised due to informed consent, he would still do the surgery. Wife decided to succumb to my pleadings. She cancelled the reconstructive surgery scheduled today (chemo cannot be done until approximately six weeks later and according to American Cancer Society and MD Anderson reports, >20% additional mortality rate by delaying past 60 days from the mastectomy, to meet with the oncology team at Memorial next week for chemo orientation. YIPPIEEEE (happy dance). Now, hopefully, she'll stay on course and follow her oncology team and THEN get reconstructive surgery. You guys are amazing... thank you so much for all your info!

BarredOwl

Thank you for the update and good news.

BarredOwl