Just checking back in after a month! I just returned on 4/29 from our river cruise from Prague to Budapest with two of our best friends and had a marvelous time. I did get tired at the end of each day and was in bed by 9 pm ready to take on another excursion in the beautiful towns we visited.
I am not sure if I told you I had an appointment with the breast surgeon about my “perky” breast bc I was feeling a golf ball sized lump under the tissue. After an ultrasound she said it was a SEROMA (fluid that filled the empty space where the tissue was taken out) and that she could drain it or I could wait until it resolves on its own. She recommended waiting bc I was leaving for the river cruise two days later and she didn’t want me to develop an infection while I was away. It hasn’t resolved but now I have just started radiation treatment and they advised not draining it until radiation was finished on May 22. I have 16 radiation treatments, and have completed 2 of them. Round-trip from my home and back is an hour and 45 minutes - that was the closest facility but I don’t mind as it gets me out of the house. Has anyone here ever had a seroma?
While I was away I got an email from the parathyroid practice letting me know that my parathyroid surgeon is no longer working for them. Hmmm, interesting. His bedside manner was terrible and I am still annoyed he took out my neck lymph nodes for no reason. The lump in my throat is not as obvious but I still have trouble swallowing and must chew my food better.
Well, that’s the update from here, will let you know how the radiation goes.
Sue, from North Carolina
Morning Annie,
Just reaching out to see how you are? Sharn
Morning Val,
Just reaching out to see how you are? Sharn
Hi Sharn
I’m good thank you. I did go back to have a check up recently as I felt a hard area under my breast near the chest wall. It wasn’t near the surgery scar so I thought I’d better get it checked out.
I had yet another mammogram and an ultrasound as well as two consultants physically examining me. Thank goodness all was well and nothing to worry about. They both said that radiotherapy makes the breast tissue dense and sometimes hard in places. It’s the gift that keeps on giving!!
How are you doing Sharn? Well I hope, and you are progressing well? Take care. Annie xx
Hi Annie
Great to hear that was nothing to worry about. Sounds like they were very thorough too.
I wanted to let you all know, I asked the consultant recently the question of whether having a TNBC with apocrine features is the same as apocrine TNBC and he said no. So that’s another bit of information for us all here.
Hope you are all able to enjoy the bout of lovely sunny weather
xxx
Just checking back in. I have 4 more radiation treatments and I’m doing well. The radiation oncologist checks me every Monday and last week he jokingly said “are you sure you’re getting radiation?”. He was amazed that my skin is not irritated and asked what I was using on it. I use Gold Bond Excema and spray Aquaphor twice a day. He said by the end of the week I should experience irritation and fatigue. It’s Saturday and I’m feeling none of that. I’ve been playing pickleball 2-3 times a week for 2 hours at a time and haven’t been exhausted. Not bad for a 70-year old!
Now let’s talk about the painful Seroma. Ugh. It has diminished in size (golf ball to ping pong size) so that’s good but it feels painful when I check the size. They won’t drain it until after radiation is completed.
Hope everyone is doing well.
Cheers from North Carolina
Well done in terms of radiation. I didn’t really have any reaction to the radiation either at the time. My skin was good (and is still) and I didn’t feel tired.
They warned me that the side effects can sometimes be later down the line 3-6 months after. At that point I did feel more tired but still carried on with twice daily walks with my dog (who i sadly lost a week ago am am lost without him), as well as yoga, Pilates and Dancefit. The most problematic issue for me was scar tissue. It became very dense and corded after radiation and pulled when stretching across my chest or arm. This has been pretty much sorted now with gentle massage. I wish they had mentioned doing this earlier to be honest.
Anyway, I hope all continues to go well with radiation and the seroma. Take care. Annie x
Just checking in with all of you to see how things are going.
I am not sure if I wrote that I had my seroma drained - well, let’s just say they tried to aspirate it but they couldn’t get anything so she manually tried to express some fluid through the hole the needle made and some did come out. It still is rock hard and is in a bad spot where my bra band at the breast crease presses on it. I feel pain around the area - dull and sometimes sharp - but I know it’s always there. I’ve tried massaging it, putting heat, binding but it is still there. I read they can sometimes take a long time to go away but it’s been almost 4 months since my surgery.
I am getting ready for my cruise to the British Isles in early August and getting very excited to visit your country. We will be in Dover, Liverpool, and also Wales, Ireland, and Scotland. If you can, make sure there is good weather while we are there! Ha Ha!
If anyone has advice for my seroma let me know!
Sue from North Carolina
I am so happy i found you! On 06January i was diagnosed with invasive breast cancer triple negative with apocrine feature, grade 2. I had the consultation with the oncologist and surgeon and the plan is to have neoadjuvant chemotherapy followed by surgery. I am worried that i will go through chemotherapy and the tumor size will not reduce as it seems that the apocrine type is not responding so well to the chemotherapy usually administered to triple negative breast cancers. Did any of you have success with chemotherapy? Please advise. I am afraid of going directly to surgery as the area of calcifications is not small 2.5cm x 3.2cm but i am wondering if chemotherapy will work. Please share your experience.
Hi Tulip55
I’m so sorry to hear of your diagnosis and know how you must be feeling. With apologies if I’m repeating what you may have already read, my diagnosis of the Apocrine type of TNBC was confirmed after surgery so the pre surgery chemo was not possible. Also the tumour was very small (7mm x 11mm plus some precancerous cells around) which was all removed with clear margins. Also, the cancer had not migrated beyond the breast into the glands. However, it was still suggested I should have the same chemo for TNBC even though there was evidence it had not worked in the majority of Apocrine patients. At that point I decided to seek a second opinion. I had an online consultation and was told I should definitely NOT have chemo as the tumour was very small and had not spread to the lymph glands but should just have radiotherapy and defo no Bisphosphonate treatment.
So my advice if you can afford it, is to go privately and get a second opinion - my consultant was Dr Alice Okines, and two years ago the fee for a one hour online Consultation was £200 and worth every penny! I wish you all the very best and send you love and hugs xx
Thank you so much PeonyViolet-4!!! Thank you for the advice and the name of the consultant - I am located in Canada Toronto so I am looking for a second opinion at Sunnybrook hospital - my primary physician sent a request and i am waiting for a response this week or next week. Reading a lot about apocrine subset it seems that although i am scared, I might need the chemo (the size of the tumor (area where calcifications were noted 2,5 x 3,2 cm) is big and it would be risky to go to surgery first) Maybe having chemotherapy and immunotherapy (as was in Keynote 522) is safer. But i am waiting for the second opinion and will consider all information.
Well done you. If the consultant says go for chemo and immunotherapy too at least you will be comforted that you sought verification. Either way I think it’s important that your views and involvement in the decisions about your body are listened to and taken into account. After all it is your life in debate and not theirs! Sending you love and hope xxx
Hi tulip55
I am sorry to hear you are going through this . I was diagnosed with tnbc with apocrine features in 2024 .
I was advised to have neoadjuvant chemotherapy and immunotherapy .just like many of the ladies on this forum , I felt confused and unsure whether to go ahead , as I had heard that chemo might not be effective.
After lots of discussions , I decided to have the chemo but have regular scans to check that it was working . I wanted to be able to switch course and have surgery if it looked like the chemo wasn’t working . I had my surgery in early 2025 and was told that the chemo had killed off about 2/3 of the tumour .
I wanted to share my experience , but obviously everybody is different .
The chemo was bearable .. you can get through it !
Sending love. I am happy to answer any questions you might have , just reach out
Hi Mrs_p1
Thank you so much for your message and good wishes! I was also advised to have neoadjuvant therapy and after a lot of discussions I will start the therapy next Friday. They mentioned that after 12 weeks, they will check the tumor size and I might start the second set of medications (cyclophosphamide and doxorubycin/Adriamycin) or I might go to surgery. I am not clear how do they measure the tumor’s response? Is a MRI performed at the start and end of chemotherapy? Can you please tell me how did they measured the tumor response in your case? Thank you very much!
Hi Peonyviolet,
Thank you for your message! Yes, I believe they were listening to my concern! I will start chemo and immunotherapy and the tumor response will be assessed after the first 12 weeks of chemotherapy (options will be to go to surgery or continue with doxorubycin and cyclophosphamide). Will keep you posted and thank you so much for your good wishes and support!!!
Hey Tulip , in my case they monitored me via mri scans with dye in my bloodstream ( contrast ) and via ultra sounds of my breast. I had these tests prior to my treatment starting and after 12 weeks . I do believe there’s a blood test they can do to measure cancer dna … but my oncologist said that the results might not be so useful, so we used the scans . I was warned that there was a risk that the first scan might make the tumour look bigger / brighter … just because of the chemo killing it .. but I think my scans showed clear progress. I did ask a LOT of questions .. I asked to see every scan and challenged everything. I wanted to understand everything and empower myself . I wanted to feel that I was part of the decision making and not just being told what to do . This helped me a lot , but everyone is different . I think the medical team thought I was a nightmare 
My wish for you is that you sail through those first 12 weeks with only small side effects from the chemo and that you can feel the tumour reducing with your fingers .
Chemo tips … Drink lots of water before and during the treatments …. Eat well .. especially iron rich foods . Trust the process , breast cancer treatments have come on so much in recent years . You will get through this . Try and stay away from social media and all the sensationalised stories about tnbc . Everyone’s journey is different and reading some of these stories is not going to help .
Hi Mrs_p1
Thank you for your message. They also ordered a MRI scan for me but it seems that where i am in Canada (Toronto) there is a long waiting list for having a MRI. I am thinking of having the MRI at a private clinic if the procedure if delayed for a long time. Did you have the chemotherapy for 12 weeks and then the surgery or you had 24 weeks (6 months) of chemo followed by surgery? I am also not an easy going patient - I am asking many questions and informing about what is going on and what treatment plans they have. And you are correct and I am cutting on searching social media as each case is so different and sometimes you need to limit your searches only to simple facts that can help you (i.e at this point i am just searching for chemotherapy side effects and how to limit or manage them).
Hey Tulip ,
I had the full 24 weeks of chemo treatment before I had my surgery . This was my journey because the scans after 12 weeks did show that the chemo was working . I had a 5-6 week break in all treatment after the chemo , just to let my bloods recover a bit before surgery .
I can say that I was utterly terrified of the chemo treatment , I had a lot of preconceived ideas about what it would be like …. However I learned that it was no where near as bad as I thought it would be . My oncology team prescribed pre chemo treatments like anti sickness and anti histamines, steroids etc .. these all helped to minimise the effects .
I did have at least 3 occasions when my red blood cell count and / or my white cell count were too low to have the treatment.. and we just delayed the treatment. This was not helped by the fact that I am vegetarian.
There’s lots that you can do to help yourself to stay well throughout the treatment . Drink loads of water , eat really good healthy food, take lots of care around your dental hygiene, watch out for little infections that might derail you … things like ingrown toenails and conjunctivitis.. report anything like this to your oncologist/ doctor.
I stayed really well throughout and I do think this has a lot to do with staying mentally well .. I carried on working throughout the whole treatment . I know this may not be possible for everyone , but I could and it helped me mentally . I did everything I I would normally do .. going out with friends , babysitting my grandchildren , going on holiday and sporting events etc .
I chose not to coldcap . I lost my hair , eyebrows and eyelashes …. But I purchased an amazing wig , false eyelashes and temporary brow tattoos … I honestly looked better than I did before the treatment … and it was soooo easy to just pull a wig on .. it really helped me to feel good about how I looked . I didn’t want to go wigless . Obviously this is a very personal thing and everyone has a different approach.. all valid . … but I don’t want you to feel that the hair loss etc will define you .
Sending you so much love .. you will get through this and better days are coming xxxx
Hi Mrs_P,
Thank you so much for your message!!! — it is truly heartfelt and encouraging, and full of very useful information about chemotherapy and ways to help prevent side effects. Your positive attitude and the way you faced such a difficult time are really uplifting. Thank you from the bottom of my heart.
The oncologist has moved the start of treatment date to February 2, and I was fortunate to obtain an MRI appointment for February 13. I will keep you updated, and thank you again so much for all your help.
Please stay in touch …
Work as a team with your oncology team and tell them all your symptoms, they will prescribe you things to help .. if the anti- sickness they give you doesn’t work .. just ask to try a different one … I honestly think there are ways of minimising the impacts .
I suffered really badly with stomach acid … I didn’t initially recognise this , as it was a sensation I had never really had before . Once I figured out what the issue was , they prescribed me a daily antiacid tablet .. it was an absolute game changer and I felt 100% better within a few days … sharing this because you should not suffer in silence .. there will always be things they can prescribe to help