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.
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.
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.
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.
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. 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.
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.
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.