Most women with breast cancer end up requiring some type of surgery to remove a tumour. Breast-conserving surgery includes a lumpectomy or partial mastectomy, and removing the full breast may be done as a single or bilateral mastectomy. The surgeon will typically propose the recommended surgery, and most commonly this is a lumpectomy when possible, and a mastectomy if needed because of the woman’s medical situation. A double mastectomy is rarely recommended and only in cases where the risk of breast cancer is high, such as with certain hereditary breast cancers. The breast can be reconstructed if desired at the same time as the surgery or later on, check reconstruction surgery. The surgeon usually checks the lymph nodes under the arm during surgery for cancer spread. Options for this include a sentinel lymph node biopsy and an axillary (armpit) lymph node dissection.
The women we spoke to described the period just after finding a lump and before surgery as a very insecure time, and you can read more about this in the sections on testing and diagnosis and perspectives on treatment pathways. Women described different reactions and coping strategies around surgery. Some women spoke about keeping perspective around losing a part of their breast but not their lives. Most women described a period of adaptation and finding a new sense and meaning in the changes related to their body. When women are confronted with complications or negative experiences with surgery, this period can be particularly challenging. You can read more about the impact on women’s emotional lives in challenging emotions.
Patricia and Isla explained that a partial mastectomy and lumpectomy are basically the same type of surgery to remove cancer from your breast.
The other thing he said to me which is really, I think important for women to understand is, he said “Don’t think of this as a lumpectomy. Don’t call it a lumpectomy. People will call it that, it’s not.
Donna and Kathryn’s lumps were bigger than originally expected. Iceni had a bigger scar than was explained which was a shocking experience for her. And, although unusual but unavoidable in some cases, Ginette and Patricia developed a hematoma (a swelling of clotted blood within the tissue) and had to be treated for that in the hospital. Overall, the women we spoke with explained how they had learned to live with their changed appearances.
Clear/unclear margins after the lumpectomy
Many women we interviewed underwent a single lumpectomy and then learned that all the cancer tissue was successfully removed and the ‘margins’ were clean – there were no cancer cells found on the edges of the removed tissue.
They scheduled my surgery, I think it was August 21st, I remember that really well and it was a very scary feeling. I didn’t know what was in there, but I was very fortunate when the surgeon came out, (he) told my husband that I’m going to be fine, that it hadn’t spread anywhere. It was only 1 cm. It hadn’t gone into my margins and it hadn’t gone into my lymph nodes.
He was uncomfortable. But me, I freaked out, I didn’t cry. I was unable to cry. I was too mad. I was ok, above… But then she was writing it all, and then my boyfriend said: “Calm down…” Finally she said: “No, let her be, she needs this and I am used to this. Let her be, it’s ok…”, meaning “well ok”. I said: “Don’t tell me that I will have to go through this again. Don’t tell me that you missed….” Anyway, there is nothing. I don’t remember everything that I told her but it was…. I prefer not to remember. So finally I went back to the reception, I completed another questionnaire and I got a surgery date in 4 weeks. Well. Finally when I arrived I didn’t have to wait for long. Finally I waited patiently. And then my boyfriend told me: “Listen, we must reassure ourselves. She operated you twice. Normally the second time she shouldn’t miss her shot.” Because she has 25 years of experience, so she must know how to do it and what to do? She missed the first time. Normally she should do it right; she should target it so that it is alright the second time.
Indeed I was operated a second time, and then, they put staples because this is what had to be done. And when I returned to remove the staples, may be 10-15 days later, then it was really like the ad we see on television. When you fall on your back!
Lymph nodes (sentinel node biopsy)
Women told us about having lymph nodes removed during surgery which varied from a few to 30. When cancer was found in the lymph nodes, women were advised to have chemotherapy. Nadia and Christa on the other hand had clear lymph nodes but were still advised to undergo chemotherapy because of their specific type of cancer. Laurie had one node that tested positive but requested more testing to decide about chemotherapy.
The first time I had surgery to remove the lump in my breast they also did a sentinel node removal. I am sure you are aware that you have to go to nuclear medicine and have a wire inserted and isotopes injected so that they can identify the sentinel node and remove it. My nodes came back clear; which was a relief. I had to have a second surgery however, to get clear margins. They had not taken enough tissue out the first time.
Some women described having drains inserted after a lumpectomy or mastectomy. They mostly managed to drain the tubes themselves or with help from family, or, as in Annie and Lorna’s case, they had help from a nurse who visited them at home. The time the drains were left in place varied from 1 to 3 weeks. Most women didn’t experience any pain with the removal, either because of the painkillers they were on or because the area was not sensitive anymore after surgery.
Well you have drains Jackson-Pratt drains that are stuck on the side of your body literally. You feel like you’re in the matrix where you have this grenade looking tube, where all the liquid comes and it just takes all the liquid to prevent infection from the wound. It leaks into this drain that you have to empty yourself.
Mastectomies are rare as a lumpectomy is the preferred treatment if it is possible. Some women, however, underwent a mastectomy and they described a process of mourning or missing the breast(s), in part as losing some of their femininity. At the same time they told us that their breasts were not necessarily the sole essence of being a woman. Julia organized a little ceremony to mark her loss and after that never looked back. Joanne made some pictures of herself the night before the surgery. And Joanne like Tina never mourned the loss of her breasts.
Samantha and Nalie felt that because they underwent immediate reconstruction, the emotional impact of seeing their chests after surgery was perhaps less stressful. See reconstruction surgery. However, for others, it was not easy to see the results of surgery. Annie and Joanne told us that the number of staples was impressive to see, but Annie thought it was not as bad as expected. Other women described the emotional impact of losing their breast as shocking and horrific, and for some it took a while for them to be able to look at the area or touch it. Julia and Malika did not feel ready to see their chest on the first day and waited a few days. And May-Lie has found it so hard to get used to the scars that she is still unable neither to look at them nor to touch them.
I met lots of women since, who feel they’re losing their womanhood. I didn’t care about that, to this day I still don’t have any plastic surgery done. I just can’t find the time, it doesn’t bother me that much, I guess maybe if my breast was bigger it would bother me more but it doesn’t bother me as much. So we decided that (a double mastectomy) and the next day I went in for surgery. I spent 4-5 days in the hospital. I guess the surgery itself was the hardest part, probably the day they took the bandage off, just that’s when reality hit I guess. It was staples, I had had a C-section and a couple of ectopics and I guess the scars from those surgeries aren’t right there in front of you. It isn’t that visible and I only had staples once between my C-sections and my couple ectopics. Now it was staples and it was right from the middle chest right up into your armpit, where they take the lymph nodes and it was so horrific to see it. Two really good friends were there the first day the nurse took the bandage off, they happened to be visiting. So that’s one thing I always said, I was going to give somebody feedback on by telling the story; nobody warned me, the nurse just took my bandages off as if it was normal. It was horrific to see my chest for the first time with those 43 staples across.There is still blood, it is dried up to me it was “Wow”, I am glad my two friends were there. But they just happened to be there visiting when she was changing the bandage. I thought maybe someone was personal enough to have said “When her friends are there we are going to do it.” I asked them after and they said “No she didn’t mention it to us we didn’t know what was going on.” So that was probably the toughest initial part, it was like “Oh my gosh”, really, after the whole shock of cancer. I asked for a mirror, I wanted to see it and then one of the girls held the mirror up while the nurse was changing it at the hospital.
My friends stayed, she, the nurse, asked if I wanted them to stay and I said “Yes”. I asked to keep the mirror up because it is a very personal thing. I guess your breasts are different. I wanted to see exactly what it was going to look like. I don’t care what it looks like; I’ll go without prosthesis in lots of times it doesn’t bother me, but that was a horrific day. The pain, I had a lot of pain healing, I guess I wasn’t expecting the surgery pain. I had experienced surgery before but there was a lot of burning pain. I don’t know if it was because it was right up in the armpit and you’re moving the armpit a lot. Just in the incision, just a lot of burning when I was healing. With my previous surgeries, I never had that kind of pain. I did have one surgery where there was a small complication a heamatoma, but the chest pain was worse. It was just a lot of burning pain. And tight! My chest was really tight. It still is to this day, I still have chest pain to this day. I get massage every two weeks. If I didn’t have deep tissue massage every two weeks, I don’t think I could raise my arm. I coach competitive gymnastics. So, I am lifting kids a lot, I need my arm. I never did massage regularly until recently, like every two weeks, I tried every three weeks but two seems to work, until about two years ago and I finished treatment about four years ago. So the first couple of years, I spend a lot of time with my arm in pain, I had a couple of bouts of lymphedema.
In rare cases, breast cancer surgery involves double (bilateral) mastectomies. Annie was nervous about surgery and couldn’t find enough information about what to expect after a double mastectomy. Some women talked about the amount of scarring which was difficult for them; Joanne said the scarring made her chest feel very tight. Other women also spoke about reduced mobility, and some received referrals for physiotherapy or massages, although others were discharged from hospital without any further instructions. Physiotherapy, massages and exercise were helpful for improving mobility and to help prevent lymphedema.
The women we spoke to had different understandings about why they underwent hysterectomies and oophorectomies. A hysterectomy involves the removal of the uterus, but it may also involve the removal of the cervix, ovaries, fallopian tubes and other surrounding structures. In an oophorectomy, a surgeon removes both ovaries — the almond-shaped organs on each side of your uterus. Your ovaries contain eggs and secrete the hormones that control your reproductive cycle.Removing your ovaries greatly reduces the amount of the hormones estrogen and progesterone circulating in your body. This surgery can halt or slow breast cancers that need these hormones to grow. Women with BRCA gene mutations usually also have their fallopian tubes removed at the same time (salpingo-oophorectomy) since they have an increased risk of fallopian tube cancer as well.
In women who have yet to undergo menopause, oophorectomy causes early menopause. For some young women who were experiencing challenging side-effects of the hormone treatment or for whom the hormone treatment was not working well, undergoing an oophorectomy was a way to change their hormone treatment. (For example to change from tamoxifen to an aromatase inhibitor a woman has to be menopausal to be able to take this medication.) You can read more about this in endocrine (hormone) treatment.
May-Lie experienced bleeding for over two months after her breast cancer treatment (chemotherapy and radiation). The reason for the bleeding could not be identified and she decided to undergo an oophorectomy. Julie had to have her ovaries removed to be able to switch to another hormone treatment after the first treatment did not work very well.
Decision making lumpectomy versus mastectomy
Even though the surgeon normally proposes a recommended surgery, in some cases the women were asked to decide between a lumpectomy and mastectomy. Only in rare cases of breast cancer is there an increased chance for survival with a mastectomy. For other women it is a personal choice. The women who were able to decide between a lumpectomy and mastectomy described advantages and disadvantages of each procedure.
The surgery’s a day surgery, even though they, in my case they took quite a bit of tissue, but it was done in one day. I was able to go home. I went out for lunch with my sister the next day although I don’t think you should do that. I think that was a bad decision because I didn’t feel well after that. It was fine if we look at all the research, the radical mastectomy approach doesn’t have better outcomes, being able to keep your breast is kind of a nice, nice thing especially if your surgeon’s really good in terms of not mutilating you I guess, for lack of a better word. It’s fairly convincing evidence that the partial or partial’s just another term for lumpectomy, one does not imply more tissue than the other, it’s just they’re synonymous. So those approaches that are breast conserving, let’s say, have very good outcomes. There’s really no need for excess surgery, although it’s kind of clouded now, with all the Angelina Jolie and stuff, where she’s clearly in a different category with having a BRCA1 gene*(Breast cancer 1 gene). So, I can see why she did what she did, but I think a lot of women have jumped to surgery thinking it’s, more radical surgeries, thinking that they’re a better option, when they’re not, when often times it’s not the case. Because you feel at the time, I understand the feeling, just take everything away so that this won’t come back, but that’s not exactly how it works.
There was a, well, the decision was to get the tumour out right away and then see later if there was going to be more surgeries. But at that point if you have clean margins and the surgery was successful and you can manage how it looks afterwards then to go on with more surgery, you really have to weigh that out, right. Surgery and reconstruction, the reconstructive surgeries, from my understanding, from people who have had them, they’re very… it’s quite invasive. It has to be weighed pretty carefully.
Oh, if there’s a recurrence, I think I’ll just sort of listen to multiple opinions about it but I think (…) I think the one advantage to the double mastectomy approach, is kind of eliminating mammograms and that kind of thing in the future. But you still need to be followed up because you can still get a recurrence on a scar. You can, breast cancer’s sneaky, and that’s the theme I’m coming back to. You’re never sure fire approach, right. If there’s a recurrence, I would take that decision at the time given the full knowledge of the situation.
Interviewer: How do you feel about the results of the partial mastectomy?
Pretty good, really good. A good surgeon makes a big difference I think. I would tell people to really scout out their surgeon before even a breast conserving surgery because the placement of the scar can be camouflaged and it’s a good surgeon can do some remarkable things and it’s quite amazing.
*BRCA1 gene: Mutated gene that can increase the carriers chances of having breast cancer.
Well, I was fortunate enough to have that choice because the tumour was at a size where I could have a lumpectomy or mastectomy. Also there was just one. So, we had to have the MRI before the surgery because if there had been more than one cancerous tumour in the breast, I don’t think I would have had that choice, but I did have that choice, so, I was fortunate.
No they just took the whole breast off. I said “Forget it”, this, I should have done it in 2003. All those four surgeries, I should have listened, and I should have said “Take the whole thing off” but again, I was vain at that time. I didn’t want to have a mastectomy, I really didn’t and I was adamant that I didn’t so that’s it.
Single versus bilateral (double) mastectomy
It seemed in rare cases that women were offered the choice between a single or double mastectomy. Women talked about weighing the advantages and disadvantages of a single versus a bilateral (double) mastectomy. Different women offer different types of advice based on their experience.
Shelley had prepared herself well on the options by the time she saw her doctor; she preferred a bilateral mastectomy. Although very rare, Tina spoke about how a slower growing cancer was found in her second breast.
Back before the surgery I talked a lot with my surgeon and I decided at that time, that I was going to have both breasts removed.
I had a TRAM flap*(Transverse Rectus Abdominis Muscle Flap) and what they did, I’m not sure if you know what that is, that’s when they removed your (a muscle from your) stomach and they put it into your breast and Dr. (name) did that and he was excellent. Before that I saw Dr. (name), I saw another Dr. I was very disappointed with him because when he had checked looked at me he told me that I was getting older and saggier and my breasts were drooping and I’d probably get cancer in my other breast, so I may as well have a double mastectomy. I told him I wasn’t that vain and I left. I asked to see another doctor and then I went to Dr. (name). Dr. (name) was absolutely wonderful, he came to see me every day in the hospital and a couple times a day. He was very attentive, very good and I was quite happy to have him. One of the nurses asked me why I would go through all that at once and I told her that I liked to flash the girls at work and I needed a set. I don’t know if she thought that was funny or not but we that’s just me.
The sad thing is that I know a lot of women, younger women who have had a double mastectomy and when I’ve asked them they have said “Oh! I don’t want to get cancer in my other breast.” I think that was put there by a doctor and I don’t think that they should be fear mongering and it’s too bad that they do. I understand they’re doing, as far, as I’m concerned, they’re doing it because they get paid for two mastectomies, not one. Or it’s, they’re on the table, they just want to do it so that then this person won’t be back again to have the other one done and it’s too bad. It’s too bad that a lot of women are waiting for mastectomies and they haven’t been able to have them yet.
* TRAM flap: A section of the lower belly containing blood vessels, skin, fat and muscle is cut and used for breast reconstruction.
I would say that what I found the worse about the surgery, it is not the surgery itself, because I cannot say, it was not the surgery itself that scared me. I wasn’t afraid that I wouldn’t wake up or that it wouldn’t go well. It was more the side effects after. And it was worse than I thought. Otherwise what I found the worse is the loss of autonomy among other things. In my case, I was not even able to put on a shirt by myself, or a pyjama, or a coat for about two or three weeks. I couldn’t. I always had to ask for help. I also had a hard time to wash myself since they had removed lymph nodes on both sides. It was still a big operation that I had compared to other women. So… So I didn’t have the use of my arms. Still it is a minority of women that have both sides done at the same time. So, but this is it, I didn’t have the use of my arms during that time. So, like at home I do not have anyone to rely on to help me, but I spent a month at my parents’ house to get a little help.
Otherwise, in my case I had excellent services from the CLSC. They came every day or almost every day, except when I had visits to the hospital, during a week and a half. Even during the week-end they were coming to change the bandages. Once I had a problem with a drain and they came, a second time the same day, so really. My surgeon had made the service request so it went very well. But six months later even if there is a large improvement, you know, I have not recuperated 100% of the movement of my arms. But of course it is faster for some and slower for others. I am one of the more complex cases.
Of course there are scars following the operation. In my case it starts on the side, really in the back, almost in the back through the same place on the other side. All in the front through the other side almost in the back, and about the equivalent of two fingers where I was not cut. So I really have two large scars. But I find that one looks better than the other. But it is because I thought that they would both be the same, meaning both going in the same direction. But on the left side, the scar is really horizontal, as on the right side it is more diagonal. So, I thought that the scars would be more similar than they are.