Mastectomy w/o hormone suppression?

[Trouble74]

Ok! I just realized the women here “speak” with a different accent, lol! I’m sorry I didn’t see this is for women in the UK before I started posting! This was the first website for support that came up when I did my frantic searches, and I’m thankful y’all are all so responsive. I feel sad for all of us in this situation. Love and prayers for all of us!

[Trouble74]

So far I only know I’m estrogen and progesterone positive, haven’t gotten the other results, yet. The women in my family are all heavily estrogen laden, yet no breast or gynecological cancers! I suspect my case was triggered by an accident where I was helping my father-in-law, who has Parkinson’s, transfer from his walker to a wheelchair, but we fell and the handle of the walker stabbed my breast. I was slightly hyperthyroid at the time due to taking NP thyroid (dr wanted levels higher), and taking prometrium. I couldn’t keep my weight up, so I was eating some high glucose foods daily. I think it was the perfect storm.

The women in my family are nurses, and I’ve helped care for my husband’s parents (non-small cell lung cancer, congestive heart failure, Afib, Parkinson’s, diabetes), so I know how to ask questions and push for treatment. But now I’m on the other side, and it feels strange to ask and advocate for myself, like I feel cautious! I guess I will have to pretend there are two me’s, and leave me the patient in the hall, while me the advocate speaks with the doctors. 

Maybe y’all all know this already, but i don’t feel like part of this world right now, like I’m removed. Y’all have been like lights that point me in the right direction! I hate that I’m not alone because it’s not exactly the good kind of cancer to get, but I’m glad I have good company!

[cath20]

Hi, 

Sorry to hear about your diagnosis. I hope the road trip helped. 

It sounds like you need a lot more information before you make any kind of decision. And that is what your appointments will be able to help with, so go in armed with all of your questions to get as much out of them as possible - NB: there are NO nonsense questions!

I can only speak from my own personal experience, so I would suggest talking this through with a nurse on the helpline.  They should be able to give you a better idea of what sort of information you should be asking for at each stage of your treatment journey. There might not be enough info at this early stage to enable you to make your decision. In my experience, more information became available the more tests I had and we made decisions as we went along. eg. The post-op tests on the tissue removed revealed more about the true extent of the cancer in the breast (there was more than the mammogram and ultrasound had shown). So that informed how we progressed after the op. 

It sounds like you are someone who wants the facts, so make that clear to each person you see. I wish I had done this. At the beginning, clinicians talked in generalities and made reassuring statements. I didn't realise until some way into treatment the amount of information they had about my cancer. And once I got more data I felt much more confident in my choices. Eg. One specialist told me my chances of living 5 years was 75%, and she explained the potential impact of the different treatments suggested for me. Chemo was estimated to add three percentage points to my survival chances, hormone suppressants five percentage points and bisphosphonates just one percentage point. These percentages are based on many factors (my age, size, type, grade of cancer etc) and calculated from the experiences of thousands of women in my position who went before me. The figures are no guarantee, but I found them useful in deciding whether to have the treatments. So you may want to ask, "Based on the data you have, what is the risk of recurrence if I do a,b,c compared with x,y,z?" And if they can't tell you, maybe ask if there are any tests you can have to help inform your decision. (But, again, best check with the nurses helpline on this).

I know it is not easy. I absolutely hate asking questions. It can take me days to pluck up the courage to ring my breast care nurse to ask for something (I don't want to be a bother or a burden). And sometimes I don't get a satisfactory answer so I have to find a different route and ask someone else. But I always feel better once I have had the conversation. 

I'm very impressed that so soon after your diagnosis you are reaching out for help and information. I was in a daze for weeks. There is lots of good information out there but, as other people have said, no two cancer patients are the same. So what is right for one person may not be right for another. Only you - with input from your treatment team - can really decide what's best for you.  

All the very best to you and your family.

Catherine

[Evie-S]

@Trouble74 - welcome to this forum, though obviously I’m very sorry you find yourself on here. You have already had some very wise advice from Jaybro. It’s early days and you probably are being swamped with loads of info and new terminology.

I’d also like to add that no questions are nonsense, it’s your body and important that you feel happy asking questions before you agree to treatment. Most of us on the forum who are diagnosed aren’t medically qualified so we don’t understand much about the treatment that is being offered. People fall into two camps, those who want to know everything (me) and those who go along with what their team suggests without questioning - it is a very personal decision. Take along a notebook to each appointment with all your questions and scribble down the answers as your consultant talks to you so that you don’t forget the info by the time you leave the appointment.

I have touch wood found Tamoxifen to be fine. I’m not medical but as I understand it Tamoxifen helps to stop oestrogen from attaching to cells and feeding them - the fact that they are offering you Tamoxifen means that you must be “ER+” (meaning your cancer cells feed off oestrogen). But do chat through all concerns with your team. Like Jaybro says - often the brand can make a difference, I have always managed to get Teva and now Wockhardt after Teva became almost impossible to get hold of. My GP prescribes the brand each time.

All the very best to you as you go through treatment and please come back at any time with any questions, or just to chat/offload. Evie xx

[Trouble74]

Thanks, I’d take the bitter truth over false hopes any day. I was just dx last week, then Immediately went on a long planned road trip with my family. We’re on the way home, where I will barely get unpacked before mri and visits with my care team. I just want to know what are realistic options so I don’t waste their time with a bunch of nonsense questions. 

[Jaybro]

 Hi Trouble

I can understand your dilemma but it’s based on some preconceptions and assumptions about a disease that is so varied and unpredictable. I’m sorry to sound so negative at a time when you need cheering on and encouragement. Mastectomy removes your tumour and, being Stage 1, will remove your cancer . However, it’s not a guarantee against further breast cancer - look at the number of men who get it. You don’t need a breast. Prostheses are not a great option afterwards, especially in our recent hot weather. It can all be very cumbersome. Implants would be an option. But none of this will guarantee you will never get a recurrence. Hence hormone therapy.

You’re assuming hormone treatment will be intolerable, given your recent experience. There are different brands which are tolerated differently by women. You won’t know till you try. I experienced some much needed weight gain from taking anastrozole (post-menopausal) but if the pharmacist changed my brand, I experienced unpleasant side effects. Put me back on my original brand and I’d be fine. It’s strange.

I’d suggest a good conversation with both your oncologist and your breast care nurse (may have a different perspective) once you’ve learnt from the responses I hope you get here, before committing yourself to unnecessary and irreversible surgery. 

All the best xx

[Trouble74]

I am newly diagnosed, stage 1, no lymph involvement. I’m 47, no family history of any cancers, still ovulating regularly. My surgeon recommends lumpectomy, radiation and tamoxifen, but says mastectomy is option, too.

Was on testosterone last year for mood and menstrual regulation, but it put me into menopause for a while. I’m, and everyone in my family, am extremely sensitive to hormones, so it was a mental disaster for me. I’m not scared of this diagnosis at all, just of living for years with the side effects of the medications.

What I want to know is if having a double mastectomy will give me the option of not having to do hormone therapy.  Has anyone made a choice like this? Is it even “allowed?”