Lumpectomy… radiation… now 6 months on, 4 major breast and node area infections… mastectomy is being booked.
I was diagnosed with grade 2 IDC last March. I had lumpectomy and 1/4 of my boob removed and 3 node which were walnut size but clear. about a week after surgery, i had major issues with seroma in my breast as well as node area. I was hospitalized, seroma in lymph area was 6 cm deep with no resistance from 12-2… huge filled with fluid that eventually popped stitches… This is where my main issues started, (My opinion). Every time i went to have an ultrasound… the liquid would GUSH out and drench my bra and top… Anyways, i don’t believe i was given enough time to heal before radiation.I had my first 4 intense treatments on cancer sight then they called me and told me instead of another 15 on whole breast they needed to do more as i am very big busted. They gave me another option of increasing the radiation dose and still staying with the 15 treatments which i accepted.Got thru it and then breast broke down… blistered all over. Was nasty, hubby said my boobed looked like an old aussie football that had played 100 matches all flat, maroon and mis-shapen. Again got thru that. Last treatment was 6th June '17. Septemeber was my first infection in my breast. I was put in hospital and FNA was done and fluid removed. I was told then, because i was rushed thru into radiation, my breast tissue didn’t have time to fill the void the cancer had left. Once i had radiation… killed all the tissue, hence i have void in my breast and huge one in node area. Every 7-8 weeks i end up having to have FNA to remove fluid otherwise my breast gets infected… Bright fire engine red aganising pain like nothing… not even childbirth. Can’t touch my nipple, can’t wear anything and then once it’s drained my nipple peels and i lose 4-5 layers of skin and the whole breast area peels - like when you get sunburnt. My last hospital stay was january and my surgeon hinted that we needed to discuss mastectomy. I went to the appointment and yes he is telling me that i need a mastectomy other wise the infection is going to keep coming back for years, They can’t keep draining because they are risking an external infection getting in. I am devastated… I was prepared a year ago to have a mastectomy becasue of breast cancer. My hubby and i talked alot about it and we where both zen with it but almost 12 months on… having to have a mastectomy because of an infection is a very bitter pill to swallow. I am not coping… i cry all the time… i can’t sleep … and i am just really sad all the time. Surgeon has signed paperwork as cat2 meaning surgery within 90 days. I have however booked with a new surgeon to have a 2nd opinion but my gut tells me he is going to say the same thing. I am so sad, but we have decided that if my left one goes… the right one does too. At this point i am not interested in more surgery for reconstruction at this point… Honestly i just don’t want to think about it. As anyone been where i am??? Advice?? Anything??
I had a right side mastectomy due to breast cancer 2 years ago. I imagine what you are going through is a massive shock.i had reconstruction combined with the mastectomy. I know my case is different but want to reassure you that the mastectomy isn’t as bad as it sounds…I was back at work part time after two weeks and back to mormsl after 4…its honesty not that bad. Hope you ok.
Jahe
Jane888, I’m sorry for all youre having to go through. I haven’t been through all the trauma you have but on 28th Feb at age 43 I have have a right side mastectomy and immediate diep flap reconstruction. As Jane Walton also notes, it really isn’t as terrible as you’d think. It’s definitely uncomfortable for a few weeks but I’ve been amazed at how quickly I’m healing. I’m about to start chemo and finding that a more scary thought. My newly reconstructed breast looks so similar to my remaining one that it’s truly remarkable. If you’re having immediate reconstruction then I’d suggest asking your surgeon to show you pictures of other work he has done, I found this very reassuring. If you go for removal of both then maybe implants as they’ll be identical. Again the surgeon should be able to show you pictures of their work . For me the reconstruction at the same time as the mastectomy was an easy choice as its all done at the same time so no extra stress and I chose my own tissue reconstruction as knew I’d need radiotherapy or chemo after which would damage implants. I know how scary it is, and so even more so I imagine for you as you’ve already had so much stress. Do you have a breast cancer care nurse you can speak with at all? I found that very helpful. My thoughts are with you as you push through this time, it will get better I’m sure as you are clearly a very strong woman… X Fiona
Hi Jane888,
Sounds like you have had a hard ride with repeated infections.
While I totally understand the emotions re potential mastectomy, I wonder if in part it’s directly due to the repeated discomfort and distress from the infections and wonder if after all of that there may be some degree of relief even if it is via having a mastectomy? I don’t mean that to sound harsh in any way, it’s just sometimes the key cause of anyone’s distress can become different over time.
The thing that made me think of this was the situation a lady (who called herself Lexilou on the forum) found herself in. She had a string of problems after having lumpectomy and reduction surgery on the non bc side and eventually had a mastectomy. She hasn’t posted for awhile but I’ve just found a post from her in which she is very positive about her decision and life post mastectomy and thought you might find her experience helpful:
forum.breastcancercare.org.uk/t5/Recovering-from-treatment/reconstruction-decisions/m-p/1060524#M42865
In the link she also refers to flat friends, an online mutual support/advice group for women who decide not to have reconstruction. I found a link as below:
flatfriends.org.uk/
I hope this helps. Have the infection complications reduced and have you had the second opinion now?
xxx Seabreeze
Hi Jane 888
I’m sorry for everything you have been through. I’m posting as i’ve had some experiences as you, seroma for ages (then haematoma) and had to have FNA to drain the fluid and blood clots in my mastectomy site. Thankfully I am fine now. My mastectomy was in Dec 2017 and I decided not to have reconstruction as I really didn’t want the long surgery which my surgeon said would be 7-8hrs. My scar has healed nicely. I recently started rads (4 sessions in) and the delay was due to the seroma etc, which needed time to heal.
Honestly, and this is my experience, a mastectomy without reconstruction is not as bad as I imagined and the ‘A’ symmetry does take some getting used too but I wear clothing with pattern prints and no-one would guess that i have one boob! I feel comfortable looking at myself in the mirror and am grateful that I have come out the other end. My hubby has got used to seeing the ‘new me’ and accepts me as I am. Once rads have finished I will get fitted for the prosthetic which will sort out the ‘A’ symmetry. In the meantime I’m wearing a softie. Some of my family members expected me to have recon and were surprised when I told them I didn’t want it, but everyone has come to terms with my decision.
Whatever decision you make will be the right one for you and your situation.
Sending hugs xxx
I havnt been in your situation but at 33 I had to have a left mastectomy .At first I was asking why they didn’t remove both.Im now 44 and got cancer again in my right side had reconstruction I was disappointed because I thought I was having a full mastectomy again.I can honestly say a mastectomy is the best option at least you won’t be suffering and in time you might want reconstruction. I havnt had it I allways said like mine in a box haha.Hope I’ve helped you a little