Considering no chemo advice please

thumper07 · December 2016

diagnosed 8/23 ER + and HER2+ grade 3 sesame size mal tumor BRCA 2 +

I had a complete BMX 10/10/16. I also have had Crohn's disease x 30 yrs and am highly sensitive/allergic to a lot of meds. I've had 13 surgeries for mostly Crohn's problems.

My question is, since I had the BMX is it really necessary to do taxol and Herceptin how about just keeping cancer away through marijuana? Which I have 0 reactions to. And this port makes me wanna scream, it's so annoying-ok, rant over.

But I really would love to hear from all if you too

Meow13 · December 2016

With your history maybe your mo could just treat with herceptin.

Denise-G · December 2016

Her 2 Positive is extremely aggressive plus you are Grade 3.

I speak with a lot of experience...I've talked with literally thousands of

Her 2 Positive patients. Before you just do marijuana, get another opinion

if you don't feel comfortable with your Oncologist or even if you do.

thumper07 · December 2016

we did meet with a brilliant bco and she said "I want you to wrap your mind around the fact that you're cured. There is no more c in your body and a lot of women at this point would just say No to the taxol & Herceptin and walk away."

Both docs said basically this is just insurance So, I'm trying to figure out if getting either of these meds is actually necessary. Please tell me your thought

Meow13 · December 2016

thumper, is there a vaccine for her2+? It might be trials only. I was looking at chemo but I was er+ pr- and her2-, I decided to forego chemo even though my oncodx was 34, high risk for recurrence. I am 5 years NED, I also had issues for years with digestive tract. I never got a diagnosis, that was a consideration for me not to choose chemo.

Good luck to you.

thumper07 · December 2016

thank you meow for sharing-I am not sure about The vaccine. my problem is that I'm so allergic to things that we don't do trials anymore because we don't know what the reactions could be. But thank you for your advice I appreciate it best of luck to you too

KBeee · December 2016

It partly depends on you age, life expectancy, etc. If you are 50 and expect to live 30 more years, then I'd lean towards doing it. If you are 78 and are hoping for 10 more years, then I'd lean against it. It's always a risk/benefit balance. If you choose chemo and herceptin, hopefully you could just do 12 weekly Taxol and then continue the Herceptin. That's mroe tolerable than the other options. Get multiple opinions, and once you make a decisino, just move forward and don't look back. Best wishes. These are tough decisions with no easy answers.

BarredOwl · December 2016

Hi thumper07:

It would be helpful if you could include information like the type of breast cancer (e.g., IDC, ILC, other histology), the actual size in mm, and your lymph node status, all of which may affect your risk profile.

Some patients are surprised to learn that even relatively small (less than or equal to 5 mm), node-negative (N0), HER2-positive invasive tumors can pose some risk of incurable, distant (metastatic) recurrence. This is true regardless of whether local treatment is by mastectomy or lumpectomy plus radiation.

Surgery is a local treatment. There is still some risk that some tumor cells may have broken off and migrated to distant sites prior to surgical removal, laying the groundwork for "recurrent" metastatic disease. Such undetected micrometastatic disease is not evident on scans and presents no symptoms initially. Systemic treatments, such as endocrine therapy (for hormone receptor-positive disease), chemotherapy, and HER2-targeted therapy (for HER2-positive disease) may be recommended to address this possibility of distant spread.

Clinical and pathological factors affecting distant recurrence risk profile include histology (e.g.,ductal), lymph node status, tumor size, ER, PR and HER2 status, as well as grade and the presence of lymphovascular invasion. Systemic treatment recommendations include consideration of the potential distant recurrence risk, based on studies of the rates of distant (metastatic) recurrence in groups of patients with a similar risk profile (e.g., HER2 status, tumor size, nodal status). The estimated distant recurrence risk, the potential risk reduction benefit of treatment, the potential side effects of treatment, patient age and co-morbidities, are all considerations in the personalized risk / benefit analysis. The personal risk tolerance of the patient is also a factor.

It sounds like you are triple-positive with a very small tumor (sesame seed size), such as T1a" or perhaps "T1b" in size?

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

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

If you are node-negative (N0), there is a thread for HER2+ "T1a-size" tumors (T1a = Tumor > 1 mm but ≤ 5 mm (0.5 cm) in greatest dimension). Members with T1b-size tumors have also posted there:

Calling all T1a who are HER2+: https://community.breastcancer.org/forum/80/topics/781897?page=21#idx_616

NOTE: The NCCN guidelines for smaller HER2+ tumors were changed in late 2015, so the medical advice in the early parts of those threads may not reflect current practice.

The 2015 change in guidelines was made in view of the results of this study of patients with small, node-negative (N0), HER2-positive disease:

Tolaney (2015): http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion

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

You can see the more recent posts in the thread to get an idea of how others reached a decision.

BarredOwl

thumper07 · December 2016

Hi there owl,

It is IDC, it was the size of a sesame seed(not sure what the exact measurements are) and then they found something as big as a small orange that was Pre cancerous. One lymph node was clear the other had "200 microscopic cancer cells on it"

Thanks for all the inf

thumper07 · December 2016

I forgot that it also said there was some dermatological vascular involvement. But the walking encyclopedia doc knew this as she gave us advice that many women have walked away at this point and refused to do any other t

BarredOwl · December 2016

Hi thumper07:

Please note that the thread linked above focuses largely on node-negative (N0) disease, and the information in that thread about treatment guidelines focuses on node-negative patients.

Also, please note that the Tolaney study (2015) provided above only included node-negative (N0) patients, and would not be informative for those with a "micromet".

Do you know if the pathologist considered the specific level of lymph node involvement found to be a "micrometastasis" (indicated by "pN1mi" or "N1mi" in your pathology report)? The guidelines may differ based on such differences.

Anyway, be sure to obtain copies of the pathology reports from all biopsies and surgeries and verify the important details of your diagnosis that inform treatment advice.

Like KBeee, I also support seeking a second opinion from a medical oncologist, whose practice focuses on breast cancer. Other types of doctors may offer their input about systemic treatments, but this is the area of expertise of medical oncologists. The second opinion may include an independent review of pathology results (actual slides) as well as treatment recommendations. Additional expert input, perspective, and discussion can be very helpful if one is undecided. Many find the second opinion process offers an opportunity to learn more about the details of diagnosis and their risk/benefit profile.

Here is some information from the main site about second opinions (multiple sections per menu at upper left):

http://www.breastcancer.org/treatment/second_opinion/why

If you are in the US, an NCI-designated cancer center may be a good choice for a second opinion. Even if one has to travel a bit, it can be worth it to tap into their expertise. Here is some information about them:

https://www.cancer.gov/research/nci-role/cancer-centers/find

Best,

BarredOwl

TarheelMichelle · December 2016

I have a sister with Crohn's.

I would walk away and not do ONE SINGLE chemo treatment.

If the cancer returns, you can do treatment then. Doing "preventive" chemo isn't a guarantee it won't return. It's not even insurance, insurance implies you are covered 100%. If chemo actually worked most of the time, which it doesn't, you wouldn't see so many women here.

With your history of Crohn's, chemo is likely to cause problems that won't end when the chemo ends.

If you don't want to take my advice you have the advice of two BCOs saying you don't need it.

I've lived 9 years without chemo. Hope to live many more. Hope the same for you.

BarredOwl · December 2016

I do not know what is meant by a "BCO". Does it mean breast cancer oncologist? This could refer to an oncologic surgeon, radiation oncologist or medical oncologist. As noted above, the question of systemic therapies, such as endocrine therapy, chemotherapy, and HER2-targeted therapy are within the area of expertise of medical oncologists, not surgeon or radiation oncologists. Moreover, members of the same practice/same institution may be influenced by each other, follow similar internal guidelines, and/or be hesitant to contradict the recommendation of a colleague or senior colleague, particularly in the other's area of expertise. Because of this, it is common for a surgeon to agree with a medical oncologist colleague on the question of systemic treatments. For these kinds of reasons, if not already pursued and if of interest (assuming there is time medically and under insurance (e.g., in network)), obtaining a second opinion from a medical oncologist at an independent institution can be of added value for decision-making (regardless of the ultimate decision).

Unfortunately, it is quite common for surgical oncologists to declare a patient "cancer-free" based on their local treatment, which only confuses patients when they receive a recommendation for or to consider systemic treatment. Following surgery, with no clinical symptoms and clear scans (if applicable), a patient has no evidence of disease ("NED"), which is not necessarily the same thing as cured.

BarredOwl

muska · December 2016

BarredOwl, I think by BCO TarheelMichelle was referring to breastcancer.org community.

We are not medical professionals here but we know enough to say if the cancer returns it might be too late to treat for good outcomes. I am very sorry to see that TarheelMichelle relapsed and is now stage IV but I don't understand how TarheelMichelle's case proves the point that chemo does more harm than good.

That is not to say the original poster must have chemo...

BarredOwl · December 2016

Hi muska:

Actually, the original poster used that abbreviation in a reply post, seemingly referring to a health care provider: "we did meet with a brilliant bco . . ."

BarredOwl

Momine · December 2016

I would do the herceptin and skip the taxol most likely, but I would also get at least one more onc opinion, if not two. You want as many eyes on this as you can reasonably get, because there are several ambiguities and grey areas. It is not clear-cut any which way you look at it.

Nulyte · December 2016

I too am thinking no chemo. I just received a call from my oncologist , she cancelled my appt , post BMX because I couldn't lie flat for the CT scan she ordered. Now today her staff called and left a message that said I need an appt ASAP and "you will do chemo" .... ummm that's not your decision. I am now looking for another oncologist for another opinion. So my message is be aware if you make your decision stand strong because some of them are quite pushy.

Meow13 · December 2016

Nulyte, why are they not pushing hormone therapy? Beware of bully doctors.

Anonymous · December 2016

Wow. Pushy is right (see above post). I'd be suspicious that this doc is overly defensive, and therefore over-compensates for their lack of confidence in their ability to treat patients and be an effective doctor. Interview at least one other oncologist before making up your mind, yes!

I would run away from a physician who told me what I WOULD do, without respecting my own knowledge and choices. Who's working for whom here? Docs seem to forget over and over that WE are hiring them to treat US, not the other way around.

Patient and oncologist, to me, is ALWAYS a business contract between two individuals, e.g. just as I would hire a contractor to lay a new floor for me, because they have knowledge and expertise, and I don't. But I'm still the one choosing the type of flooring, where it goes, and what color it is. And paying for successful installation of the floor I wanted.

I'm paying for expertise and successful treatment, based on mutual agreement, from my physicians. If they can't deliver, then they get fired.

Claire in AZ

rozem · December 2016

to answer the OP question about whether or not to do chemo...this would be clear cut in my eyes but the Crohn's is definitely complicating matters. I would seek the opinion of large Cancer Center that has a Breast Cancer Department as they will have treated many more patients than a local hospital and therefore may have seen this situation, or something similar, before. I do think if it was me I would explore every option to have the taxol and Herceptin at the very least (this is less toxic than what most of us get - TCH or ACT or FECD with H) The micro mets in a node would concern me as well. Her2 positive cancer, we've said it a million times, is a different beast - we know that it likes to move, is very aggressive and has a higher recurrence then her2- cancers, even in the smallest of tumors (and yours seems to be tiny)

I DO NOT agree that you should save the big guns for later...The point of chemo is to go for a cure, yes there are NO guarantees but the survival rate of her2 + breast cancer has improved dramatically with Chemo + Herceptin - those are facts you cannot ignore.

As for Herceptin on its own, someone can chime in here but I do not believe there are many studies on the effectiveness - chemo and H work together from what I understand

Meow13 · December 2016

My breast surgeon asked me to use my engineering/math experience to help make my decisions. When I looked at things from that stand point I felt much better about the decisions that I made. What he didn't realize was that I always look at things in that prospective it was my job for over 30 years. Figure out what your goal is and plan according. Research is key and knowing your own body and how it responds. I see many people with stage 4 that say I want to live to see my child graduate from high school and do treatment accordingly. I think that is a good thing to recognize, others say I want to live what remaining years I have left in the best possible health and do treatment accordingly. Taking ownership so to speak is a good thing. What is not so good is saying my doctor told me I have no choice.

Nulyte · December 2016

Hi -- I did my research and agreed to do endocrine therapy and proton radiation. I met with RO and he heard me out , agreed with my conclusions and said that I am absolutely right , it's all based on statistics and humans aren't statistics and even in stats there are outliers. I had Mammaprint and it was done on the core biopsy , I even called and pulled some strings and spoke to the clinical director in California who runs the clinic and we talked thru my options. I think at this point my oncologist is mad because I have stood up to her and she's being petty ... my cancer is Luminal A and not respondent to chemo. It is highly responsive to endocrine therapy. She has argued tumor size , but that was called into debate when my surgeon and resident both stated the excised tumor was 3.5-4cm and the pathologist measured 5.8cm -- since it was sliced and diced for slides we can't go back and have it re-done. My RO said he puts 100% into my surgeon because she has a great reputation as being honest and blunt. After doing hours on hours in the medical library , for myself , Chemo for me only benefits by putting my body into menopause - that I can do with Ovarian ablation. It's my belief that we have to do our own research and be strong advocates for what we want and believe in. Her office called today and I said I will come for an appt 12/21 but will not be bullied -- her office staff said "off the record , stand your ground" .... good luck it's not an easy decision and it's unknown territory.

Positive2strong · December 2016

Meow 13 I thought I wouldn't need chemo as both of my visits it was a lympectomy and rads they even said it may only be 3 weeks rads now MO is saying chemo as precaution.

It would reduce my risk of reacurrance by 10%

I am 66 and really don't want chemo I wish more survivors would pos

Positive2strong · December 2016

Winter garden,

My MO said I need chemo because my tumor size is 1.5 cm and my mamma print is Ki67 is 20%

I initially was told I would work well with anti estrogen therapy

Your thoughts

Positive2strong · December 2016

Kbee how are doing?

Positive

Meow13 · December 2016

I was not convinced with evidence presented to me that chemo was a reasonable insurance policy. It just did not add up. Happy with my decision.

starwoman · December 2016

Positive2strong

You'll see my stats below - my Ki67 was 30%, oncotype 18 and tumour size 1.9cm. I was 60 at that diagnosis and oncologist recommended no chemo as benefit would be 'less than 4%'. I did have some previous medical history which may have factored into that as well - the second-opinion oncologist agreed with the 'no chemo' recommendation also.

Best of luck with your decision.

JuniperCat · December 2016

Dear Positive,

Can you get a second opinion? You and I seem to have fairly similar stats (including high risk mammaprint, Luminal B blueprint). I had decided to get a second opinion regarding chemo. One MO was strongly pushing for it and the other MO said that, for me, specifically (I also have an autoimmune condition, which was an influence in the decision not to do chemo), the benefits simply weren't worth the risks. Like so many of us here, I've had to be my own advocate. I've learned that doctors inadvertently (and sometimes patient portals) don't always provide complete information.Try to obtain all of your documents (as per BarredOwl's advice) so that you can have copies for your own files and to give to another MO should you seek another opinion. Good luck with moving forward!!

Considering no chemo advice please

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