Anyone decide to do NOTHING after a Mastectomy?

EmmaW

Hi Everyone-

I had a mastectomy for large areas of LCIS. The pathology came back with Stage I, ILC, no node involvement. The oncologist recommended going on Tamoxifen for 5-10 years. I'm kind of hesitant because the chance of recurrence is something like 5%. 

Has anyone else just decided to "go with the odds" and not follow up with the drugs? Am I totally crazy? Need some feedback here.

Thanks!

funsizejen

It is such a tough decision.  If I were you, I would ask myself some questions.  Why not take Tamoxifen?  What is the minimum time I could take it for?  Can I stop it if I decide to?  Am I willing to deal with the chance of recurrence?  10 years from now, what will I wish I had done now? Can I get a second opinion?

Maybe that's not very helpful, but when I made this decision, I made sure to get all the information I could and then got honest with myself about my expectations. Fwiw,  I am taking Tamoxifen.  Good luck with your decision!

Betty14

Dear EmmaW,

                        I decided NOT to take tamoxifen. I read every bit of information I could about the drug before making my final decision. I also discussed it with my husband, my BS, my Dr and my oncologist. It was an agonising decision to make.....I remember I even spoke to a pharmacist and he gave me a pamphlet all about Tamoxifen and the possible side effects. I cannot make the decision for you. With me I felt that the risks of me taking Tamoxifen would outweigh the benefits.

   Now I cannot stress to you enough how much this needs to be your own decision. Like you, I also tried to find help and support online with my decision but I didn't find it because it really is ultimately upto you and what you can live with. Sometimes I question my decision and when I do I talk to my husband or Dr about it and they remind me that I was well informed at the time and that I made the best decision for me. I wish I could help you more with this.  I also have to add that Tamoxifen doesn't work for everybody but that is something that isn't evident until some considerable time has passed with that treatment.

 I am the sort of person that struggles with medications probably due to my anxiety about possible side effects so take this into consideration. When I talked to my breast care nurse about my not wanting to take Tamoxifen she said this: " It's your decision, but how are you going to feel 2 years down the track if it comes back ...I don't want you blaming me...can you live with knowing that you didn't do everything possible to prevent it coming back?"  I will never to this day forget her words. I then rang my breast surgeon and she said she thought I should take it.....she said it it could come back in 5 years. I found what they both said to be very unfair and I was hurt and angry so I spoke to my Dr who arranged for me to speak to my oncologist and my onco gave me some percentages and we came to the conclusion that it was ok for me not to take it.

Sorry about my ranting but I thought my little journey might help you to see the bigger picture.....how it really comes down to what you can live with ...so please make sure you do what you feel is right for you. I wish you all the very best and I am sorry you find yourself in this situation.

 Perhaps you could discuss this further with your oncologist.

farmerlucy

Emma - Sorry for the surprise dx. I happened to me too, but IDC. It sucks. I was dead set against Tamoxifen. After all wasn't that what I wanted to avoid by doing the PBM? It took me quite some time to settle down and give the drug a fair shot. Turns out it is not as bad as I feared.  There is a thread in the hormonal therapy forum where many ladies have opted out of HT.  It is an option. For me the knowledge that I was doing everything I could to prevent recurrence was a sort of weird freedom. It is out of my hands now. Whatever happens happens.

It is not an all or nothing deal. You can try it and if you can't tolerate it you can quit. BTW one excellent SE of taking Tamoxfen for me is that it has virtually stopped my periods.  Waa hoo! 

tsevin

I decided not to take T-mox due to its SEs.  My Oncologist had me try it three different times and each time I had different SEs.  My decision not to take it was a quality of life issue.  Kudos to those who can tolerate it!

Sunshineinky

I decided to take tamoxifen simply because I wanted to do everything I could to prevent it from returning.  

The 1st month was a bit rough but as of today I'm currently SE free.  

It's truly a personal decision.  

hzzr

I can share my experience.  I've had breast cancer twice - both were primaries (like getting BC for the first time).  10 years ago it was IDC and I had the whole Lx-chemo-rad-Hercptin deal. I took Tamoxofen for 5 years then and tolerated it very well. I really didn't notice it having an impact on my daily life.   The fact that I hardly missed a dose says something.  I was 35 then.

Flash forward to 2013.  DCIS with micro invasion resulted in an Mx (eventually - how I resisted that Sx!!)  Onco put me on Tamoxifen again.  This time I've really struggled.  Few physical SEs but I struggled with anxiety to a degree that was impacting my quality of life. I missed doses and found it better - and once I missed three in a row and found the anxiety issue just disappeared. So I have taken a Tamoxifen holiday til I see my onco in July.  Stopping has made a huge difference and I would only go back on it very carefully. I am 45 now and wonder if I'm in perimenopause and if the Tamoxifen is interacting with a wonky endocrine system.

The reason I share this is to show that the drug can be different at different times in the same person. I didn't go off it lightly - my oncotype score was mid range and the risk of recurrence scores are based on the patient being on Tamoxifen for 5 years. But going through all this treatment just to be miserable and hate my daily life didn't make sense, obviously.  I am sure it isn't all Tamoxifen's fault but it certainly played a role.

You don't have to do the full 5 years but rather try it and see how you feel? You could have my first experience.  My 2 cents :-)

rivercaralee

No, EmmaW, I don't think you are crazy.  I am considering not doing Tamoxifen also, and my oncotype score is 23.  So with Tamox I have 15% chance of recurrence, without it it could be higher, more like 20%.  I am 51 and just one year without a period.  My onc. initially said Tamoxifen is too toxic and put me on Letrozole, which I had to quit after just 8 days of horrible side effects.  I'm not going to start Tamoxifen lightly after that experience.  I read some study that compared much lower doses (1,5 and 10mg) to the normal 20mg, and found that it was effective.  Has anyone read about this.  Perhaps I am misunderstanding the literature?  I am worried about permanent effects.  I still feel pretty weird although I stopped the letrozole 11 days ago, but certainly much improved!! 

rosemamma88

Emmaw,

I just came across your post and although I cannot tell you what I think YOU should do, I will tell you my story quickly.

I was diagnosed with DCIS in 2011, grade 3, ER/PR +  but no lymph nodes and 'clean' margins (although close at 1.5mm) I was not told about taking tamoxifen at the time.  But I wish now that I had.  

A few months ago I was diagnosed with a recurrence even though I was told (then and now) that there is only a 1% chance of that with the DCIS I had after doing a bi-lateral mastectomy.  I do not know if I would be here with this new diagnosis if I'd been taking the tamoxifen, but I wish I was given an honest discussion about it.  

As I keep saying to my doctors now, that 1-2% seems REALLY small until it turns out to be you.  Then you start looking at statistics a bit differently.  

Good luck with your decision.  All you can do is listen to your heart and make the best decision with the information you have now. 

wandawoman

Emmaw

I too struggled with the decision of taking Tamoxifen. Neither of the oncologists I saw recommended it, however, they were willing to give it to me if I wanted to take it for my sanity. They stated that the risks involved with taking the drug were more than any benefit I would receive. After a couple of weeks wrestling with the decision, I finally decided not to take the Tamoxifen. I agree that only you can make the decision, it is such a personal choice. I must admit there are times that I second guess myself, during those times I try to pull out my rational mind and remind myself of why I made the choice I did. Wishing peace and comfort for whatever decision you make.

Ruthgrace

it could have been me writing your post.....I feel the same. Had double mastectomy and left it at that. No poison for me. Not doing chemo or tamoxifen. Changing lifestyle rather and trusting God to keep me well. Makes no sence to put poison in my body.

Ruthgrace

it could have been me writing your post.....I feel the same. Had double mastectomy and left it at that. No poison for me. Not doing chemo or tamoxifen. Changing lifestyle rather and trusting God to keep me well. Makes no sence to put poison in my body.

Ruthgrace

no you are not crazy......we have a choice. I chose to do surgery and change lifestyle......thats it

Meow13

I am deciding to go with the odds and not do chemo, however I am doing exemestane.

edwards750

Boy you guys got guts. I have been on Tamoxifen for 3 1/2 years and have to say its not a walk in the park but its not too bad either. To me it's an extra insurance policy. To be fair there are women who experienced horrific SEs so everyone is different. Having said that my Oncotype score of 11 included a recurrence rate of 8% if I take Tamoxifen for 5 years. 

Our doctors, specifically our oncologists, need to inform and advise us. Of course it is up to us to do our homework and to make the best call for ourselves- our bodies, our lives. For me, I am just not willing to play Russian roulette with this beast. Too scared to. Just be sure you don't second guess yourself. 

Diane

Meow13

The only reason I am doing AI's is it doesn't appear to be as dangerous as chemo and provides some possible benefit, I pray everyday the cancer stays away and the exemestane will not cause permanent damage to me.

Msjackiefan

Hi there......I am a survivor for just over  year and decided to reduce my risk as much as possible. My one area of challenge is losing weight so that's been a long haul, but I've added back alot more lean protein and salads into my diet.. I was not given chemo due to zero score on Onco DX and stage one with no lymph. I did have a bilat mx because of the hyperactive nature of the various findings in my left breast and the fact that I had had a benign tumor removed years before in my right. I had an immediate recon, which probably has reduced some stress.  In my situation, I reduced my risk by 10s of %s by doing the surgery;  and by taking Anasterozole-I'm post-meno-I reduced it to between 2- 5% according to stats. My feeling is do whatever I can so long as the risk in the near future to my  organs is not that great. Down the road, since I would  anticipate advances in treatment,  I'm not so worried about  right now. I want to watch out for the next 5 years when the risk of recurrence is higher and I know treatment is what it is today. I also take extra Vit D and am living with taking Boniva monthly as I did have some osteopenia.

I've had some side effects of minor flashes, some weird dreams and a bit of memory loss. I ignore the flashes as much as I can; have adjusted my sleep schedule so I'm really tired when I go to bed and don't stress over waking up sometimes, ie, read, watch TV-and I keep good notes at work. I'm lucky in that I actually had a surgeon say to me, 'I believe you are probably cured of this', which was nice,  but I know to  never trust cancer. I will continue to fight with all weapons, enjoy life NOW  and sleep more soundly at night, living with some achy joints and a little sweating. Best wishes. I hope you just do what feels right to you.

Niru

Hi,

I just had a mastectomy for ILC, and it was a large tumour,, occupying 10cm, but no nodal involvement. mitosis 1.

This was just 2 weeks ago. I plan not to have radiation or hormone therapy. Chemo was not suggested.

ER+ PR- HER-.

But I found out that -

a) Tamoxifen has side effects, and can cause uterine cancer and strokes. I have had uterine fibroids, and there is a family history of strokes.

b) Tamoxifen does not kill cancer, it only slows it down from progressing. I am postmenopausal, vegetarian since 1998, low in ER and so was prescribed Vagifem for vaginal dryness, already have thinning and greying hair at 64. So, I cannot see a major advantage here for a slow growing cancer, if there are any mets out there.

c) ILC has two kinds of ERs. ER alpha and ER gamma. Tamoxifen only works on ER alpha and actually is thought to proliferate ER gamma cells. This decided it for me. And cancer can develop resistence to drugs.

I am going to rely on a diet low in hormones and phytohormones, and the amino acid methionine. Apparently, cancer cells are extra dependent on this and we cannot make it in the body. It is found in higher levels in animal sourced food. So a low protein , low caloric diet with low methionine levels (some is required for health at 15mg per kilo of healthy target body weight), and weight loss to reduce ER production. And of course watchful attention to my body, while I get on with life.

Apparently, nettle root is a natural AI too. I am willing to give that a go while watching the effects carefully.

I also read that low dose aspirin slows cancer cells spreading.

Good luck to all on this journey.

Racy

Have you compared the efficacy of an aromatose inhibitor medication versus Tamoxifen?

Amelia01

Niru - I just quickly looked up methionine and note that it is highest in many of the foods which are recommended for cancer (salmon, flaxseeds, brazil nuts, sunflower seeds, other nuts....). Do you have links that show the relationship to cancer?

I'm starting to feel like the few things to eat that give me pleasure are now off-limits.

Which testing showed the alpha vs gamma ER aspect?

Meow13

Actually, I would consider doing nothing after mastectomy if I had it to do again. Which I hope I don't.

swg

I'm with you, Niru.

I'm also refusing Tamoxifen, for many of the same reasons you mentioned.

And also because my risk of recurrence w/out drugs is 8 percent. Tamoxifen brings it down to 5 percent, but the risks are too big for me.

I wouldn't say I'm doing "nothing."

I'm workign out. I'm in a Livestrong program at the Y. I am doing acupuncture and massage therapy and planning on doing yoga.

I changed my diet. I read a study where eating at least 5 fruits and veggies a day, and getting at least 30 min of exercise 6 times a week cuts recurrence considerably.

I really feel pretty good, actually, and positive about not taking meds.

swg

And good call on the aspirin, but do get your dr's input because aspirin has side effects, too.

I saw an MIT researcher speak about the incredible effect of aspirin on lowering breast cancer recurrence.

Also, eat broccoli sprouts and cruciferous vegetables. Studies show an anti-carcinogenic effect of these foods. I've been eating broccoli, broccoli sprouts or kale almost every day.

swg

edwards750 -- did anyone figure out what your recurrence rate is without Tamoxifen?