Two opposing views to treatment

hmurph

Two opposing views to treatment

hmurph

I'm new to the discussion boards but have been reading quite a bit trying to find some advice on how to proceed with my treatment.  I had a lumpectomy on July 1st with sentinel node dissection.  I was diagnosed as stage 1c, grade 3, with negative lymph nodes and I'm ER+PR+ and HER2-.  I am 40 years old and premenopausal.  I met with my medical oncologist for treatment options and after being told by my breast surgeon that I would most likely be recommended to have chemo because of my age and the grade 3 cancer, my medical oncologist agreed but also sent my tissue sample in for the Oncotype DX test.  My MO went on vacation out of the country so I met with another MO at the same hospital for follow up and even though my Oncotype came back as 13, he still recommended chemo based on my age and telling me we should tackle this from all angles.  I had surgery last week to have a port installed and showed up this past Monday to start chemo.  My MO, now back from vacation, walked into the room and told me that based on my Oncotype score, he does not want to do the chemo.  I've had a rough week not knowing what my next step should be and I'm furious to think that I had an unnecessary surgery that general anesthesia was used for, but don't want to do chemo if I don't need it.  I've asked my surgeon to send me for another opinion at a different hospital because I'm so confused.  Has anybody else ever experienced such opposing views to their treatment?

AlaskaAngel

I haven't experienced that, but I'd want to have a much clearer explanation as to the scientific basis for the recommendation for chemotherapy from anyone who is recommending it, with a thorough rationale and more than just your age. Maybe there are other factors to consider, but I'm not hearing them in your summary. It could be a difference as basic as "old school"/greater experience" doc vs "younger doc with newer knowledge"?

A.A.

farmerlucy

hmurph - Wow - you have been through it. AA may be on to something re: "old school". Another opinion that you trust sounds like a great idea. I hope everything settles out soon and you decide on the treatment that is right for you. Hang in there! 

Meow13

What do you think? Sounds like the onco is being very reactionary. Chemo is pretty bad stuff and if it isn't reducing your risk of getting it back in a vital area then don't do it.

However I think tamoxifen is assumed to get your Onco score to 13. I would definately do that.

I think you should see another doctor.

hmurph

I definitely think the "old school/greater experience" vs "younger with newer knowledge" is the biggest factor.  The MO that recommended it has worked in this hospital for many years and will be retiring soon.  The younger one is only 36 years old and definitely has more reliance on the Oncotype DX test.  My surgeon explained that had I walked into their office 10 years ago, there wouldn't have been a question, I would have been recommended the chemo, but that medicine is changing.  I completely understand that and do not want to do more than I should, but my head is spinning because I had prepared myself for it and had the surgery.  I'm most upset that my MO didn't bother to look at my case when he returned from vacation a week before I was to start the chemo and let me think until the last minute that I was about to go down that road.  I don't understand how this could happen and it makes my faith in the medical community very shaken.

AlaskaAngel

What I'm wondering is why the replacement doc and your doc are not talking it out since they are from the same institution, before putting you in this position. So I do understand your reaction.

I like the fact that your regular MO was open to chemo yet scientific enough to do the testing just in case. That says something positive about his approach, to me. The tests are not infallable, but there is such a thing as onc burnout and overkill treatment protects the doc.

AlaskaAngel

BTW - IMHO, I also put greater responsibility for initiating any discussion upon the doc who was standing in, not your regular MO, since the doc who was standing in was aware of the limited time-frame involved whereas your regular MO had no warning about any change in recommendation.

Dnice

Hi hmurph. I am so sorry you have to figure all of this out right now. I also had the oncotype done. My score was a 5. Chemo would not have helped. I am now on tamoxifen. I believe your score is in low range as well. Second opinions are so important. My oncs both agreed which made it easier for me. 

Reconstruction has been a different story. My original PS said one thing. I went for 2nd opinion and that PS told me the complete opposite. Ugh! It is so frustrating. I am not sure who to trust. I feel for you. The medical community is not always on the same page. You are wise to get as many opinions as is possible. Try to stay strong. Docs really do care and I am so sorry you had the port put in if it was in fact unnecessary. Also, all the docs kind of know one another so maybe a different hospital is a good idea? Best to you. Xo Dnice

AlaskaAngel

Also, since you are HR+, maybe doing ovarian suppression might be less drastic than doing chemo.

Jennliza

Well, I've been on these boards now for a few months and I've seen nothing "standard" for chemo so far.

I've seen Adriamycin given to stage 1 patients when both the Oncologists I saw in NYC said Adriamycin is too harsh and not needed for that stage. I've seen women who have the exact diagnosis....get recommended completely different protocols. It seeems that whatever the Doc likes or feels comfortable with they prescribe.

That being said....your OncoType is low... I've seen women with higher OncoType's skip chemo. If I were in your shoes, I would see another doctor in a different hospital for a 3rd opinion. You maybe able to send your info to a doc in NYC....like Sloan Kettering to get a 3rd opinion.

I have triple positive cancer...so if .5cm and above you get chemo. Mine was 1mm above cut off... I am deciding if I need to do all 6 treatments. Someone with 2cm+ would get the same treatment...I am considering doing 5 treatments....so not that much less. I am using Cold Caps to save my hair....so would also really like to end chemo and shedding earlier if possible, but not with risk to my survival of course.

Good luck and if you need chemo....its not that bad....at least so far for me. I have my 3rd tx on wed.

 

SailingWind

I would ask for more info and another opinion. You will have to take pills with positive ER that is a give my opinion fron what i have read and been through. Chemo does harm as well as good. 13 is a low score so is up to 18. Then medium risk to 30. Another opinion for piece of mind

SailingWind

let us know

hmurph

Thank you all for posting!  It really does help to talk it out and see what other BC patients think.  I live in Maryland, so I have many options as far as good hospitals to get referred to.  I've been given the option of John Hopkins but I'm opting for Mercy Hospital.  There are several women in my area that I met at a BC support group that have gone there and are very pleased.  I know the Oncotype score is low but not sure I feel comfortable putting all faith in it and basing the decision entirely on it.  From what I've read, there are more than 200k women diagnosed annually with breast cancer and the Oncotype has studied samples of 4k total and has only been used since 2008.  I realize it is biology, but there are always outliers in these studies.  Will let you all know what the third doctor says.  Thanks again!

bevin

Hi there.. I had a similar experience.  3 opines :one said I should have it as I was young, second said not necessary but would prescribe if I elected it, third said theyd be comfortable if I disnt have it.

All three were from accredited hospitals.

I ended up choosing to not have chemo as the actual benefit was about 4 - 5 percent.  Its a big decision. Im glad though I was given a choice. 

Keep us posted

voraciousreader

I would recommend your case be presented to the tumor board at your hospital. I would also recommend the Mammaprint genomic test to confirm the OncotypeDX test's low score.  

AnnBR

hmurph, my heart goes out to you. I definitely agree with getting a third opinion. In my case, a positive node was found, so I thought for sure I would be getting chemo. When discussing treatments, my MO said chemo would only reduce the chance of recurrence by 4% and the long term risks would outweigh the benefits. She did not recommend it, but if I really wanted chemo, she would treat me. I didn't. What gave me peace of mind about my decision was my complete trust in her. She has done a significant amount of breast cancer research and explained in detail her findings about all treatments. Plus I was fortunate to be treated at a clinic that takes a team approach to patient care, so before I was seen, she had discussed my case with her peers. I am sharing my story only to tell you how I came to peace with my decision. I hope you will find peace with yours and that the answer is as clear as possible. Best of luck to you.

Ann

aqua2

You're right about there being no standard treatment, but  none of us are all standard.  If you are being treated just like so and so because they are say also her2, it does not  follow that you should  have identical treatments. Those of us taking the same meds could be prescribed differing doses of the same drugs.  What is concerning is that it appeared there was no team approach where the docs got together to agree on a plan-as did my onc, onc surgeon, and plastic surgeon.  It was a plan until  I met with the plastic surgeon, who then disagreed with the plan after her examination of me. She attempted to reach both docs then, long story short-they all reassessed, and agreed with the plastic surgeon.  I do believe that 2 competent docs can have differing approaches.  I'd go with who explains best why in your case, a plan is best vs another and too seems to have another pro in the mix who may catch or question something. Surgeons seem to be a bit afraid of my onc, he questions everything and everybody including me.  It's comforting to have multiple eyes reviewing things-if one of them goes rogue, there are others who will have questions.  

PeggySull

I agree with someone who suggested the tumor board review your case.  I also don't know if you are triple negative, in which case chemo is almost always recommended.

Hope you get some clarity.  Your situation is the kind that would provoke high levels of anxiety for me.  Again, yes, the tumor board.

Hugs,

Peggy