Views on Hormone Therapy as I've refused Chemotherapy

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I may well be the only person on the planet who thinks the way I do but I’m looking for some experienced comments on my plans.

 

I visted the GP in August after discovering a lump on the upper breast which was puckered.  He looked at it.  Told me it wasn’t in the breast and put me down as a routine referral to see the Orthaepedic department at the local hospital.  You can imagine the expression on the consultant’s face when I arrived there to evidently declare I was in the wrong place.  Three days later I had a breast biopsy done and a tumour was confirmed.  Legacy so far:

 

23 Nov 2015          Lumpectomy performed.  Radioactive blue dye did not pick up anything erroneous in the Sentinel Node while surgery was being performed.

 

8 Dec 2015            Results back.  Tumour is Grade 2 and has been slow growing.  Lumpectomy successful and margins clear.  I am Hormone Receptor Positive.  However … a ‘‘very small amount of cells found in the Sentinel Node by the Pathologist.’’  Axillary clearance recommended as a precaution.

 

4 Jan 2016            Axillary Node Clearance performed. 

I found handling the drain bit a bit of a nightmare but it was removed at the end of last week.  Now here on Wednesday I have puffy swelling under the arm.  Saw the GP today who recommends I go to the drop-in Clinic tomorrow where they may draw off excess fluid.

 

Throughout this I have refused to consider Chemotherapy as my past experience of friends/neighbours and work colleagues who have been through it has all concluded in my last meeting with them being in the graveyard after terrible suffering.  I also understand from the GP today that the highest chance of Chemo making a positive difference is 20%.  I don’t feel those odds are worth the extreme pain for limited gain ans would rather go off to have a damned good holiday while I still have some quality of life.  Nor am I a woman who really wants to swim in the high emotion of headscarves, wigs and the ‘‘special club’’ one smiling Chemo sufferer broadly explained it as being.  I don’t want the attention or sympathy. I just want to get back to work ASAP.

 

I am happy to undertake Radiotherapy as I have seen positive benefits of that for various forms of cancer.

However, until the recent ANC wound has healed and the swelling subsided, I don’t expect that to happen soon.

 

The point of my question: 

As I tested positive for Hormone Receptors, what is the recommended treatment - or mix of treatments for those of us who don’t jump on the Chemo conveyor belt?  (I have other reservations about Chemo being a lucrative commodity for pharmaceutical profit - but that is just my opinion of course).

 

This has rumbled on since August so my view is the longer I hang around in between tests/operations/biopsies/tests etc, my chances of any recovery with any treatment grow slimmer.  I am of the opinion none of us will go on forever, the human being is not indestructable.  My best years are behind me and most of my family have now passed on.  I can understand those people with young families who take everything going because they have more to strive for.  I would just be interested to hear of …

 

… anyone like me who has rejected the chemo but have considered other treatments.  What are your recommendations on hormone therapy?

 

Thanks

 

Misa.

 

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Chemo for breast cancer is not that bad. Some people work through it. You can feel a bit rotten for a few days during each cycle but a lot of the time you are ok.
I really didn’t want it but ultimately decided it was worth a shot. I was 49 when diagnosed so potentially had a few decades of life left. You don’t need to join the special club. I didn’t. I hate all the rhetoric surrounding cancer. It’s not about bravery but for me, just a bit of endurance. I think if I was much older, say Late 70s, I would have refused chemo though.
I sympathise with your distrust and scepticism though. I do have doubts about the benefit to some drug companies.
I can’t give you advise on hormone treatment alone but I believe it can be highly effective depending on the hormone sensitivity of the tumour.
Might be worth a chat with your breast specialists. Good luck with whatever you choose.

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Misa

Why don’t you get an oncotype dx test, which gives an idea if you are high or low risk for recurrence. 

You could take the tamoxifen & see how bad the side effects are.  Some people don’t find if that bad.

I had chemo, because i couldn’t get Herceptin without it, but I’m not sure I would do it again.

x

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I think everyone’s choice of treatment is very personal to them. I had grade 3 tumour with no node involvement. I had lumpectomy,chemo,rads and have now been onTamoxifen for 4 years.

 

My oncologist advised me to have chemo as I had a Grade 3 tumour, I decided to throw every thing at it and having discussed with my GP and surgeon I reluctantly had the chemo. It wasn’t pleasant but bearable. I am retired but managed to ride my horse,long walks with my dogs and Yoga all the way through. The only people who knew about my breast cancer and treatment were close family. Not everyone wants to join the ‘special’ club you mention but everone copes with a Breast Cancer diagnosis and treatment in different ways.

 

Tamoxifen does have side effects but is not so bad once you geet used to it.

 

Good luck in whatever you decide to do.x

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Hi Misa,
I had grade 2 lobular invasive no lymph node involvement margins clear had wle last March. Have been on Tamoxifen since May and Zoladex monthly injections since November. Like you i refused chemo as i live on my own and enough was enough it only upped my odds by 5%. Had 5 weeks radiotherapy. My oncs put me on Xoladex as a belt and braces approach they said because i didnt have chemo. This is a decision i do not regret as having researched and my oncs told me that Xoladex in trials is coming out more effective than chemo for preventing a recurrance. Only you can decide whats right for you but speak to your oncs rather than your GP as they are far more on the ball with the latest research. Hugs Dee xxx

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Hi jiggyjo,
Yes Zoladex is only given to pre menopausal women x

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Hi Misa,

Hope you dont mind me replying. I have been desperat6ly searching for people who for whatever reasons have chosen to refuse chemotherapy.

 

I was diagnosed with breast cancer last october. had a mastectomy and cent lymph biopsy. taken three all clear. I am just hitting 70yrs have several illness which I self manage.

 

The only argument the oncologist gave me was a report from the predict website.out of 100 women.

they do not know why or how or from what the people died from out of 100 women 65 to 67 will still be alive in ten years time.? I dont know what all the facts and figures are for  there are many and varied and change from diferent parts of the country as to life expectancy.

But the experts are really insistant to have the chemo yet do not have all the facts themselves.

How many of us are being given wrong advice by well meaning experts?

whats your opinion and do you have any good tips for me. thanks.

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Hi Misa,

 

I think you are being very sensible and asking all the right questions.

 

My postion was a little different to yours as my lump was agressive, fast growing and had already spread to the lymph glands when I was diagnosed. It all happened very quickly. 

 

If that hadn’t been the case I would have considered my options more closely. I had another reason for trying chemo in that I have a pre-existing neurological disease that some chemo drugs are being trialled as a cure. It was a “quick way” of doing my own personal trial for that as well.

 

Chemo totally felled me. I had severe side effects and the medical team who should have supported me were too busy and unobtainable to do so. Ended up bedbound and unable to care even in a basic way for myself. I’m now only able to leave my home a couple of days each weak and unable to work.

 

That said, the chemo worked really well and the lump shrunk down to almost nothing. The cancer in the lymph nodes disappeared as well but I didn’t know this until the SNB). I wanted to shrink the lump and have a lumpectomy instead of a mascectomy. That worked very well. Surgery and Radiation, although gruelling were easier than chemo for me.

 

For me, personally I decided against a lymph node cleareance and went for a SNB even though my surgeon wanted to carry a larger clearance out. I found a USA study which supported my decision. 

 

I was HER+ and ER+ so I have having Herceptin injections every three weeks and am now considering hormonal treatment.

 

I’m going to try Tamoxifen at a half dose for a few months and see how I go.

 

 

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Hi Misa
I was totally the opposite and wanted chemo as at my first appointment for results was told in was in the lymph node they biopsied. I have difficult family circumstances and for me I wanted to be able to say I took everything offered so there could be no regrets. I know there are other issues that may arise with all of the treatments but we all have to live with our decisions and that was the one that suited me. None of the treatments were easy but then I didn’t expect them to be. If I were older (I was 48) I may have not had chemo but then I don’t know. If it recurs I would still take the same path today.
BUT that is me. And we all have the right to choose.
I am currently taking anastrazole as I had gone through the menopause. I felt sick during the day so swapped to taking it in the evening which suits me much better.
Predict showed in my case hormone treatment had enough theoretical benefit to give it a try.
Good luck with your decision xx