Consultants divided opinion

Hi Folks,
I have just got back from my appointment with the oncologist and I have been left stunned.

The session was to discuss follow up treatment following a mastectomy 6 weeks ago as a result of a 2nd recurrence of BC in the breast and lymph nodes.

Three weeks ago I saw the Breast Consultants who said that as they had done all the surgery and given FEC and radiotherapy that they were hoping that it was a cure, but could give no guarantees as the recurrences suggested the cancer was resistant to chemo and radiotherapy. He also said that the cancer was tested for Herceptin receptors but the outcome was inconclusive so further test would be made.
He said that I was to be referred to the oncologist as the possibility of Herceptin would be discussed as well as the possibility of further chemo.

Well today when I saw the onc consultant her opening comment was ‘We have argued long and hard about your case’.
The consultants are divided and the decision was left to me.

The breast consultant says that as my scan did not show up any spread of cancer then I should not go through the toxic chemo and to save the regime should I need it at a later date.
The oncologist felt I should have chemo because that as the last lump taken was large and grade three and given the 2 recurrences in a short time the cancer could still be active in microscopic cells not shown in the scan. She said that the down side was that they would be using up the option of this chemo if it was needed at a later date. Also I am hormone negative so no other drugs will be of use to me.

I asked about the results of the Herceptin receptors and she seemed to dismiss this, she said the results were not in the file and that she would chase them up. She felt that as the first lump was Herceptin negative this one would be too but I pointed out I was told it was HER2+. I feel quite let down on this but I will chase this up with my BC Nurse.

I have very mixed feeling, yes I was given both sides of the argument. I feel that as the professionals can not agree on my treatment giving me the choice feels like a double edged sword.
If there definitely no spread then I will be subjecting my body to toxins unnecessarily. But if there are microscopic cells else where in the body then I have secondary cancer anyway which is not curable, only manageable. If I use up this regime now will I regret it at a later date? My gut feeling is that chemo will never work for me but the other self preservation half of me says take what is offered.

Oooooh what a dilemma, I have said yes to chemo because I feel better be safe than sorry but I am stunned at the split in opinion and not having the Herceptin results.

My husband was with me at the time and he sees it quite clear cut, take the chemo, she’s the expert shes advising it, I suppose he is right but this stunned feeling is confusing me.

Thanks for ‘listening’ whilst I rant.

Carol

Hi Carol,

What a horrible position to be in and how hard to make the decision.

I am triple negative also and had both AC and taxotere chemotherapies during primary treatment. I then got a regional recurrence in April (no spread detected to other organs.) and have taken a combination of vinorilbine and xeloda chemotherspies for that. (Am continuing on xeloda which is an oral chemotherapy.)

My oncologist’s approach has been to use the chemotherapies now…rather than ‘keep them in reserve’ for later spread. I’m not sure whether this is the best approach or not but have gone along with it this far. The thinking (I think!) is that its better from a quallity of life perspective to get the benefit at an earlier rather than a later stage. I have very few chemotherapy options left now. I am also pretty secptical about chemotherapy…I know that they all fail in time (quickly for some…slowly for others.)

I wonder if you could get a second opinion from another hopsital? Oncology is an art as well as a science and decisions about which drugs to use and when to use them are not straightforward.

best wishes

Jane

Thank you so much Jane

I did hope that you would pick up on this posting because I have seen your other postings and you give very reassuring messages.

Reading your story helps me identify with something that friends and family can not provide (Please God they never have to!).

I hadn’t thought about contacting other hospitals but I will hold that thought in mind.

I feel a lot better having had such a positive reply,

Many thanks

Carol

Hi Carol,
What an unfair position you are in. I think it’s too soon to make a decision - you don’t yet have all the facts, and you’ve only just been given what facts there are! Did they give you any indication how long the HER2 results will be? I would if possible want to know that result before making a decision about chemo. Also, a bit more time may give the medics a chance to consult with other experts. There’s never any harm in delaying for a couple of weeks, if it allows a more measured decision to be made.
I really hope you reach a decision you can be at peace with
best wishes
Jacquie

Thank you Jacquie,

I must say I agree with needing the Herceptin results, in fact I think I threw the consultant by asking if Herceptin would be better.

I think I will need more info before taking the plunge so I will take a few days to think about what I have been presented with.

I am usually upbeat but because I had prepared myself for hearing whether I was or was not having Herceptin the indecision has thrown me. I have an unfortunate trait of being very organised and had questions ready, all this went out of the window during the consultation as they were not relevant. I came away feeling that although I had the choice I had been dis-empowered by the consultants conflicting views. Still I know I will feel better tomorrow, I always bounce back.

Thank you once again
Carol

Hi Carol.

Good luck with whatever you decide. I think I, too, would find out the HER results first. And if possible, get another opinion. I suppose if everyone is still divided, I would take the chemo and hope if it does happen again, a different one would work. I’m on AC right now to try to shrink the tumor. They said if it isn’t shrinking by halfway through, they will switch me to Taxotere. So, it is still trial and error.

Thank you ScottishHoosier,

Its Taxotere that I have been offered, I have seen postings about the side effects, they seem quite mixed. And you know your words trial and error seem were poignant at the moment.
Cheers
Carol
p.s. Love the name

Thinking some more and I think I would take the taxotere Carol.

I had it after mastectomy (having had AC before) and I reckon it may have been the taxotere which kept me in remission until I got my recurrence this year. (3.5 years after diagnosis.)

best wshes

Jane

Thanks again Jane,

I think keeping in remission is key especially if further developments in treatment can be made.

I feel a lot better since looking at replies to my thread, I knew I would cheer up but I did need the support of this site to do it.

Carol