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Mastectomy for Invasive Lobular Breast Cancer

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Re: Mastectomy for Invasive Lobular Breast Cancer

Hi Sunflower - it’s great to receive such positive, detailed and encouraging support from SueLSE and Jaybro, especially just before your op. I had a mastectomy with immediate recon plus full node clearance, so my recovery time was probably longer than yours will be, but I think I was back driving after 3 weeks. The first few days or so weren’t easy, but soon I started being able to do things again. As the others have said, everyone is individual and recovers differently, so just listen to your body and take things at your own pace without comparing yourself to others. The most important advice is to do the arm exercises they give you. Have you got some front buttoned/opening PJs and shirts? You may find it hard to put on t-shirts/jumpers for a short time after your op. Please ask if you have any more questions any of us can help with.

It’s also hard to know whether you will need radio afterwards, I think it will probably depend on what they find when they operate - but don’t be frightened of radio. You will find strength you didn’t know you possessed to get through your operation and any other treatment they decide for you. I wish you all the very best for your op on Friday - and please do come back on here and let us know how you get on if you feel up to it.

Hugs and strength, Evie xx

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Re: Mastectomy for Invasive Lobular Breast Cancer

I was advised to wait 48 hours before showering, which I did. I made sure I washed my hair the morning of my surgery, as I can’t stand not having clean hair for more than 2 days. But the dressings were showerproof, and I managed to hook the drain on to the handle on the shower door. I am blessed with a very positive outlook on life! The wound area is beginning to feel a bit more sore now that the nerves are beginning to tingle and come back to life. And I do still have some fluid swishing about in the seroma, but am hoping not to have that drained again so am leaving it to see if it naturally reabsorbs. I don’t think anyone can answer whether you will need radiotherapy or chemotherapy as every case is individual. I am seeing the oncologist next week, I know I will need radiotherapy but that is for the other breast. I don’t yet know about chemo, I am told they will probably have that ‘discussion’. I will be having the hormone therapy tablets after all the treatment is finished. Yesterday I received 2 swimming costumes and a swim prosthesis which I ordered online, and we are going to the seaside for a couple of days this week, so I am hoping to have a swim in the sea, which I love and haven’t been able to do so far this summer, as this diagnosis and treatment etc has been going on since April. Will be thinking of you as you go for surgery, and trust all will be well. Think positive! 

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Re: Mastectomy for Invasive Lobular Breast Cancer

SueLSE many thanks for sharing your experience. That is amazing you are on the road to recovery. Wondering,  will I be able to shower with the drain in? 

Member

Re: Mastectomy for Invasive Lobular Breast Cancer

Hi Sunflower14

I’ve just seen this thread, and want to encourage you. I was diagnosed with invasive lobular cancer, but only after a lumpectomy and lymph node testing for what was thought to be a very small ductal ca. I went on to have a mastectomy just over 2 weeks ago, and I have to say that I have recovered more easily from that than I did from the lumpectomy (though unfortunately I have bilateral breast cancer, so had a double lumpectomy, the other breast being a small ductal ca with clear margins). I am back driving, my wound has healed well, though I have had to have fluid drawn off from a seroma a couple of times. I love to swim, and have already ordered and received this morning, 2 swimming costumes and swimming prosthesis. I have already been swimming without a prosthesis, but in a private pool! The ‘softie’ I am wearing at the moment is comfy and nobody who sees me can believe how well I have recovered and how well I look. I’m 66 and retired so no question of returning to work, but I do feel fit, though need a nap after lunch. I would say don’t push yourself, or overdo it. Just let your body tell you what you can cope with. I had my surgery at 11am and was home by 4pm, and the drain stayed in for 5 days. That can be uncomfortable, and I did find sleeping on my back difficult, but I can easily snuggle on my side now. No two people are the same, and no diagnosis is the same, but please keep positive and be encouraged! 

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Re: Mastectomy for Invasive Lobular Breast Cancer

You’re welcome. I had an unusual introduction to this disease as my mammogram was clear in February. In September, I had biopsies on two small tiny ‘bumps’ that appeared on my areola (my mum had had bc twice, both caught early, so I knew it was best not to ignore them) but my doctor and consultant agreed it was nothing to worry about. Consultant biopsied both - positive. Then I had three punch biopsies of my sentinel lymph node - all positive. Then a mastectomy and full axillary clearance, with two lumps, one between the ribs, skin cells and 19/21 nodes positive. The diagnosis just got worse every time! The CT scan and bone scan came after. CT virtually clear (some lymph nodes in the chest wall suspect) and bone scan clear. Thank god for the lymph system I say Smiley Happy Then onto the unavoidable, ghastly rollercoaster of treatment. We all get through it Smiley Happy and there’s lots of support if you ask loudly enough.  May your rollercoaster ride be smooth... x

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Re: Mastectomy for Invasive Lobular Breast Cancer

Hi Jan many thanks for your reply. Did you have biopsies? I’ve had several lots the first picked up 2.8cm but the 2nd lot didn’t show anything in a different area where the ct and mri picked up 6cm. I suppose this is normal with invasive lobular ca as it’s hard to pin point due to how it grows. X

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Re: Mastectomy for Invasive Lobular Breast Cancer

Many thanks for your reply Evie, what is your recovery time for a mastectomy, or is it when I start to feel ok to work? Do you think there may be a possibility of me not having any further treatment after surgery? 

Member

Re: Mastectomy for Invasive Lobular Breast Cancer

It’s a horrid place to be in, Sunflower, but it’s all beginning now and all you can do really is trust them and go with the flow. Treatment plans vary from person to person. Sometimes a shared diagnosis leads to different treatments because of a range of factors. What I have in common with you is mammogram and ultrasound not picking up on anything but, for me,  biopsies providing the diagnosis. In fact, I was discussing this with my GP today and she said how surprised she’d been as my initial symptoms weren’t those typical of what she’d expect of breast cancer and both she and my consultant initially believed there was nothing really amiss but it was worth checking. Once cancer was diagnosed, I was told I could have a partial mastectomy and radiotherapy or a full mastectomy and straight to hormone therapy. If only the option menu had stayed like that but week after week it got worse till chemotherapy was considered essential, along with “everything we can throw at it.” However, better to be found and dealt with properly than overlooked, even if it is emotionally confusing.

 

You may find your reconstruction is being delayed because they anticipate you may need radiotherapy. However, they will have a much clearer idea after testing what’s removed in surgery, particularly if there’s any spread to the lymph nodes when chemotherapy will become first priority.

 

It is terrifying and everyone here will know more or less what you’re feeling. But we get through it, in my case by opting for virtual ignorance - just get on with it. Just don’t google. Too much information without professional explanations can be very alarming and perpetuate the fear. I’d suggest talking to the BC nurses here - they are so understanding and may help you understand things better at this early stage. You may of course already have been assigned a Breast Care nurse so use her. I felt pretty ill-informed once I was home after surgery (but that was partly my fault as I insisted on being discharged the same day) and struggled a bit with the drain but, with some very comical moments, my husband and I found solutions. I hope everything goes smoothly on Friday for you - and do those exercises! Good luck,

 

Jan x

Member

Re: Mastectomy for Invasive Lobular Breast Cancer

Hi Sunflower14 - first of all a big hug 🤗. It’s such a shock when you get diagnosed and then quickly climb onto the treadmill of treatment without having a chance to even think. I didn’t have the same scenario as you but I did have a mastectomy, so if I can help with any questions please do ask. I also had radiotherapy. 

Hugs, Evie xx

Member

Mastectomy for Invasive Lobular Breast Cancer

Thought I would post on here as I have now got my treatment starting with a left mastectomy next Friday. I was diagnosed with invasive lobular breast ca in mid June. Initially, after mammogram, ultrasound and biopsies I was told the cancer was small 2.8cm. However after the mri it flagged up as being 6cm. Because of this I had further biopsies and a marker inserted, a mammogram and a CT scan. The ct scan picked up the 6cm but the further biopsies didn’t. I would love to hear from anyone else had this scenario? 

 

I’m having a mastectomy with delayed reconstruction next Friday , I’m petrified, but wondering if I will have any further treatment such as radiotherapy after surgery. It has been suggested I might have to have it. I have to say I am relieved  my treatment is starting