Good afternoon, I was diagnosed in January 2019 with invasive ductal carcinoma of right breast, Grade 3 clinically T3 N1 MO ER negative PR negative HER2 positive(IHC3+.
I had 4 cycles of FEC, 4 cycles of Docetaxel, Herceptin and Pertuzamab followed by an additional 14 cycles of Herceptin and Pertuzamab.
October 2019 I had a right sided mammoplasty and axillary node clearance with complete pathological response.
December 2019 I had radiotherapy to right breast 40Gy followed by boost to tumour bed of 16 Gy in 8 fractions.
Three weeks ago during a lymphoedema massage it was mentioned that I had an area of inflammation, possibly cellulitis so I completed a course of antibiotics which made no difference so I was put on a 2 week referral back to the local breast unit. I began to feel unwell during this period with pain in my ribs and spine. I also experienced a lot of pain from the affected area of breast, a burning searing pain which went right through to my shoulder blade. The area also became red and slightly swollen with a definite thickening. I’ve been feeling completely exhausted but also struggle to sleep.
Yesterday I attended hospital where I had a mammogram and ultrasound which reassured me there was no recurrence, apparently there was an area of thickened skin and fluid present. I was informed that this was caused by late side effects from the radiotherapy. I didn’t really get an opportunity to ask questions at the time so wondered if you could help please? Is it normal for this to happen so long afterwards and what might have made it occur? I still have a lot of pain at the original site, sometimes it is really unpleasant, others a constant burning pain, still going through to my shoulder blade. I also feel extremely fatigued and generally unwell. If this is normal is there anything I can do which might help to relieve these symptoms?
Hi Nessa Sorry to hear your journey I had radiotherapy two years ago and I’m experiencing the same as you breast pain and to the back and ribs, I’ve read a lot and it apparently can happen that long after, I think we all panick at times with these untoward occurrences
spoke to the Breast cancer nurses on this site who were very helpful, and also advised to speak with my hospital BCNurses, my Doctor just gave me
Co-odamol pain relief but I’m also going to ask for a 3D mammogram as my local hospital only does 2 D and I want to make sure nothing missed. Hope things improve
Good luck x
Hi Preston, thank you so much for taking time to reply. It’s good to hear that it’s something that can happen, it just seems so strange 4 years after completing radiotherapy. Obviously I was delighted that scans showed no reoccurrence of the cancer but it doesn’t explain why I’m feeling so generally unwell, is that how you feel too? I’m not sure where I could get a 3D mammogram, my original tumour didn’t show on a mammogram 6 months prior to diagnosis so I’m afraid I’ve lost faith in them a little. I may ring my local BCNs, thank you again.
Hi Nessa
I too was diagnosed in March 2019 and completed radiotherapy December 2019.
I have had 2 bouts of red breast, the first being January 2022. I felt very poorly and was given antibiotics which cleared it up. Exactly a year later the same thing happened again but this time I was referred back to the consultant. It turned out I had an abscess which they think was due to the radiotherapy. It was drained and given antibiotics again.
It’s a horrible feeling when you get referred back with the same tests etc, brings it all back. I hope you get sorted soon. Take care
Thanks for sharing your journey.
I finished radiotherapy on my right breast end of Jan 2024.
I have a small area of my left breast which was diagnosed as cellulitis 2 weeks ago and am now on my second course of antibiotics. The first reduced the affected area but the small hard spot did not completely disappear. If it is still there after the second course of antibiotics I will be referred to the BC unit.
I’m also having headaches in the back of my head for the last 10 days but that may be a separate issue.
Hi Nessa46_1
Thanks for posting.
It’s good to read you were referred back to the breast unit for further assessment and that the mammogram and ultrasound yesterday didn’t show any signs of recurrence. You say however that an area of thickened skin along with the presence of fluid was seen on the scan.
Radiotherapy to the breast can cause side effects. Some of these side effects can happen years after treatment is completed. You may find it reassuring to know that it’s not uncommon to experience symptoms due to late side-effects.
Radiotherapy treatment may make it more difficult for fluid to drain from the breast tissue. This can be due to damage to the lymphatic system. A build-up of fluid, called lymphoedema, can cause swelling of the breast or chest area. Radiotherapy can also cause the breast tissue to become less stretchy and harden. This scarring or thickening is called radiation fibrosis.
You can speak to your breast care nurse or treatment team about the results of your scans and any questions you have relating to the thickening and fluid seen. It’s also important to let them know about the ongoing pain you describe in your affected breast and shoulder, ribs and spine as well as feeling generally unwell and exhausted. If necessary, they can arrange for further investigation of your symptoms to try and determine the cause.
As you mention having a massage for lymphoedema we’re unsure if you already have a lymphoedema nurse specialist. If you do, they will also be able to liaise with your treatment team about how your individual symptoms should be managed.
Experiencing fatigue (extreme tiredness) after receiving treatment for breast cancer is very common. It doesn’t always go away with rest or sleep and may affect you physically and emotionally. Many people find that they start to get their energy levels back as time passes after treatment, but for some fatigue can continue for months or sometimes years.
Other factors may also contribute to fatigue, such as: the emotional impact of a breast cancer diagnosis; altered sleep patterns; reduced activity and poor diet. There are a few situations where fatigue can be due to other conditions such as anaemia, (too few red blood cells in the body) or thyroid problems so it’s important these are ruled out.
It can be difficult to describe fatigue and other people may not always understand how you are feeling. They may assume that after treatment, you are back to normal and don’t understand the difference between tiredness and fatigue or be aware that it can continue after treatment has finished. You may be interested in the Macmillan booklet Coping with fatigue (tiredness). Our tips for better sleep may also be helpful as well as our recent podcast on sleep deprivation and mindfulness.
Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0114 263 6490 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
BECCA is our free app for people with breast cancer and also provides strategies and tips to help you move forward after breast cancer treatment.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Heidi
Breast Care Nurse
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