Confused radiation or mastectomy
Was diagnosed with early BC in June last year just shy of 42nd birthday. ER and PR + HER2- . I also carry BRCA2 mutation. My oncotype test came back with high risk. Lumpactomy done. Chemo done. Started hormone therapy - letrozole and zoladex monthly. Am now at crossroads of either doing radiation or mastectomy possibly bilateral to reduce risk. I don't know which option to take. Any experience or guidance would be most appreciated <3298ViewsSign in to react to this post4Comments
Recovery from Bilateral Mastectomy no recon. With Seromas. When does the pain end???
Hello. I am 53, and got diagnosed with dcis in October in right breast. We elected for a bilateral mastectomy and on pathology the right was 5x3.5x2.5 cm and the left surprise surprise had 2 patches of DCIS which didn’t show on Mammogram. I have been told I don’t need any further treatment - which I accept is ‘fortunate’. But I’m not Pollyanna, and I have lost my breasts, and I am so incredibly sore nearly 3 weeks down the track. Beginning to wonder if I will ever be pain free again?? Neurofen irritates my Crohn’s disease, and panadol doesn’t really do anything. Ive been taking Endone before bed, but still feel like I have bonfires in my chest, and its very tight. I also have MS, so that is not helping either. I accept this all happens, and its not easy for anyone. All I really want to know is, does this pain go away eventually? Is there anything that is not a tablet that has eased anyone’s discomfort ? I cannot bear wearing tight clothing. I’m having about 95ml taken off each side each week, and it feels like it fills up before I get home after the appointment. We have a holiday which has been planned for over a year, in 4 weeks, and I feel like we are just not going to get there. Its a bit of a pressure.ViewsSign in to react to this postComments
Both breasts removed at the same time?
Hi. I'm interested in hearing how many of you out there opted to have a double mastectomy and whether you got both breasts removed at the same time or whether they were each removed in separate operations? Did you have any problems doing it this way?ViewsSign in to react to this postComments
Double or single mastectomy and DIEP reconstruction?
Hi there, I wonder if anyone has any guidance for a decision that I realize is mine alone but is nevertheless a difficult one. I was diagnosed with invasive lobular carcinoma in August last year after discovering a lump in my left breast. I had a clear mammogram less than 12 months prior. Ultrasound showed it 4.5cm but subsequent MRI showed it 6 cm.I had very large breasts .At the first meeting with the surgeon (when we thought it was 4.5 cm) he discussed options of either breast conserving surgery or mastectomy on the affected breast.I was leaning toward BCS until we found it was 6 cm and he explained that there was a greater likelihood of not getting clear margins where it was lobular and given the size of the tumour I might need a mastectomy in the end anyway.I opted for a mastectomy and it turned out it was 5.5 cm .Also it extended right up the top of the breast so mastectomy was the right choice.I was lucky there was nothing in the lymph nodes.I opted to go DIEP flap surgery with the plastic surgeon inserting a tissue expander at the same time as the mastectomy and also doing a reduction on the right breast. I have since had radiotherapy and started on letrazole as the cancer is ER positive. It all happened so quickly and I had no one else in my family or even a friend who had ever had breast cancer so I was not that well educated at that time. I have since realized how many women have a double mastectomy,/reconstruction even where they don't have any family history of breast cancer or other high risk factors. I am planning to have the second stage of the reconstruction in June where the tissue expander is removed and replaced with my tummy fat .I didn't want to get an implant as I hate the idea of something foreign in my body and also the potential to have further surgery down the track to replace the implant.I realize that decision is very personal for every woman and also understand the DIEP surgery is much bigger surgery . When I saw my breast cancer surgeon last week he asked had I considered having the other breast removed and reconstruction in the same operation as the DIEP could only be done once and many of his patients opted for a double for that reason and also the peace of mind of not worrying about having cancer treatment again if it came back in the other breast. He wasn't necessarily recommending it but said it was something I needed to decide as it would be too late after the operation in June. I have got over the fact that it would have been nice to have this conversation before the first operation, and just want to make the right decision. I do have quite a bit of anxiety which has been heightened by all of this, and am leaning towards the double (I am 62, never considered myself as defined by my breasts, have an amazingly supportive husband who says "I just want you alive and will support whatever decision you make " and already will have one "foob" so why not two).On the other hand, it will add to the length of the surgery, have extra potential complications and recovery time and may not be necessary. Does anyone have any advice?ViewsSign in to react to this postComments
Taking the next step - buying prothesis
Hi, I haven't posted for a number of months as I have been settling in to my new life with no breasts and trying to get my energy levels back. I had a bilateral mastectomy in February last year and spent chemo and my 60th birthday in lockdown. I am now on Letrozel for 5 years but otherwise life is more or less back to normal. I had lots of support from my church and my work friends during the whole ordeal so I was very blessed. I am not sure about anyone else but it is when chemo had finished and I went back to work that I found the hardest. My life was just not quite the same as it had been, apart from the physical which was magnified by the fact that my belly seemed to swell during chemo - (I look like a pregnant woman and full term at that) but I just can't seem to shake the fatigue and I need to be careful not to be too hard on myself and let my thoughts run away from me. I look at myself sometimes and think "Oh my gosh...". I have finally decided to try getting a prothesis as I am tired of trying to adjust my bra with the chicken fillet moving all the time. If I don't wear the bra, which is far more comfortable, I really look like I am all belly. I would love some feedback on the breat prothesis you can purchase from others who have them. Are they heavy? Do they move around all the time like the stuffed ones we got in the care packs? Is there anywhere that you can go to get used ones to try before you outlay the money? It just feels like another step that brings back the reminder of having cancer. Sorry it probably seems silly to be so thrown by looking at getting these prothesis but it just brings the reality of life back to me I guess. Any feedback is really appreciated.ViewsSign in to react to this postComments
Going flat with pride
When diagnosed with early HER2+ DCIS in August (right breast), my decision was immediate. Bilateral mastectomy for me. No reconstruction. Why? I'm 61 years old, have been married twice and have had another 15 year relationship. I'm not looking for a man and furthermore, I don't care whether a man would find my flat chest attractive or not! :) Another factor was the many stories I've read here and elsewhere regarding multiple surgeries and failed reconstructions. Not for me. I also didn't want to throw radiation into the mix of treatments. On the 18th August I underwent the surgery, with no problems. Testing of the removed breasts found another tumour in the left breast, which made my bilateral decision a good one. Four weeks later I began chemotherapy through a port in the chest (Taxol, Herceptin) and finished the Taxol yesterday (YAY for me!). :) I've stuck to my exercise regime throughout and have been able to keep working. To date I have only missed two days of work (touch-wood) which were post surgery, but only because I could do so from home. Brain fog has been probably the biggest issue, due to the level of concentration needed for work. Modafinil has helped with that. I purchased the Medicare-funded prosthesis, but haven't worn them so far. My go-to breasts for everyday are seamless, padded crop tops that you can get in any department store for around $15.00. They are light and comfortable, but I wish they came in natural fibres. In the future I will need to navigate the whole anti-estrogen hormone thing. Hmm. I have a long red scar across my chest, but I don't feel like it's unsightly. I'm bald, but that's temporary. I feel like I'm in a good place. :)ViewsSign in to react to this postComments
Any advice pls - local recurrence 2..5 years post mastectomy - advised to have radiation/tamoxifen
Hi everyone - in 2017 I had stage 2 HR positive/HET2 negative tumor removed in lumpectomy. Before I started radiotherapy I decided to have bilateral mastectomy and hence no radiotherapy given. I had reconstruction with implants and advised to take tamoxifen but I only took for a couple of months and stopped as I put on weight and thought I was low risk of recurrence due to mastectomy. I have now had a local recurrence (pea size stage 2 tumor) removed last week in lumpectomy. MDT meeting advised radiation and that I must take tamoxifen. If I can't commit to compliancy with Tamox then I need to have chemotherapy. I am a public patient and I have requested an appointment with a medical oncologist to discuss pros and cons of both. Do any of you have any thoughts? Thanks KateViewsSign in to react to this postComments
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