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Views on Hormone Therapy as I've refused Chemotherapy

12 REPLIES 12
Bottyboo
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

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

Flopsy
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

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.

 

 

flipper
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

Hi Marie I am 70 just had a mastectomy and refusing chemo as got several illness already. I want others opinions on refusing it also. I am still not sure but think I will refuse.
flipper
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

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.

DizzyDee
Community Champion

Re: Views on Hormone Therapy as I've refused Chemotherapy

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

Re: Views on Hormone Therapy as I've refused Chemotherapy

I think Zoladex injections a re only offered to pre-menopausal women for prevention of recurrence. Correct me if I'm wrong. It does sound good alternative to chemo and worth discussing with oncologist. or Breast Surgeon. x

 

DizzyDee
Community Champion

Re: Views on Hormone Therapy as I've refused Chemotherapy

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
jiggyjoo
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

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

Bibi44
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

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

Butterfly318
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

Dear Misa

 

It appears that you have been able to make a decision of what is ok for yourself following a chat with your GP and that's great because everybody's treatment preferences are absolutely personal.

 

You mention a friend that was diagnosed at 52 with primary bc.   I'm not sure how she would have been able to take retirement with only a primary diagnosis.  I know she has been diagnosed with secondary breast cancer now but it looks like 8 years on....i am in touch with people in similar situations on years 4,  6 and 9 of continuing treatment.  There are lots of threads on 'Living with Breast Cancer' that may be able to offer you helpful information

 

I understand what you are saying about drug companies and to some extent we are often over treated but sadly we don't have crystal balls, if only we did.

 

Chemo was tolerable, i am a Community Psychiatric Nurse, had neo adjuvant Chemo and worked straight through. I do, to be honest, have some ongoing neuropathy and muscle weakness but was diagnosed at 50.  Since then my Son has been married, got their own house and my Grandson was born 10 weeks ago and i may have still have been around for those events without all the treament but i guess we'll never know.

 

You really don't need to have any treatment you don't want but i would definately speak with your Oncologist and maybe look at Predict with him / her before you make a decision.  It may be a low additional %. 

 

I think there is more research / credible rationale around Hormone therapy.  Whether that is recommended will depend on ER PR scores.  I took Tamoxifen for 2 years then onto Letrazole for a further 8 years  (I hope)..

 

Good Luck with your decision and treatment.  Take Care  Butterfly x     

Misa1963
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

Thanks for that Maire.  It seems many women are funnelled down the Chemo route as a matter of 'routine course.  I work full time and am the breadwinner so would rather die doing my job than aiming for what could be false hope.  A dear friend was diagnosed with cancer at 52.  She took everything going viz:  surgery, chemo, radiotherapy, hormone treatments etc.  After all of this she was given the all clear and threw a party.  I hadn't heard from her for a while so rang up to find the cancer had returned with vengeance.  She has just turned 60 years old so had taken retirement from her job.  She isn't married, no kids and has just had to move house to be closer to her brother's family for support.  All treatment for her now is palliative.  The issue for her was that if she accepted the situation at 52 she could have had early retirement from her job and been financially better off.  I suppose it is one of those things which hope do to us.  It's her case and a few others which turn me so strongly against the chemo.  I had a chat with my GP a few days ago who said the additional chance offered with chemo varies between 1% and 20% max.  Those odds arent enough to sway me to take it although I accept to many people they think it will make the difference.

Mindy63
Member

Re: Views on Hormone Therapy as I've refused Chemotherapy

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.

Misa1963
Member

Views on Hormone Therapy as I've refused Chemotherapy

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.