Radiation after lumpectomy

Wow! I’m blown away reading your stories of those clots. I had no idea that was a possibility. I had a major PE in 1999 wiping out 85% of my left lung after a hysterectomy.  I was in ICU and hospital for 6 weeks after. With that and hereditary heart disease and the B.C. on left breast I’m sighing a huge sigh of relief as the chance if s clot during radiation was not even mentioned to me.  Each time I’ve had surgery (pituitary/Brain tumour in 2000 and total hip replacement in 2011i had the Clexane injections for weeks after, on top of the regular blood thinner Plavix and numerous blood pressure, cholesterol & heart meds.  Part of my lung has repaired but the bottom not.  17 years on I am aware of the lesser capacity when I do cardio exercise and find I am more prone to pneumonia quicker than normal in the left lung but other than that at 67 now I’m very grateful I didn’t have another clot.  But I’m angry now at not being told about the possibility of a clot as I know if I hadn’t spoken up the day I was leaving hospital about a very mild feeling of a fluid ache I would’ve died. The hospital staff told me the size and severity of the clot would definitely been fatal if I’d gone home that day.  And the symptoms of a major PE are very minimal especially compared to the actual severity of the damage to the body. I was a little short of breath, had an achy feeling in my back neck etc diet of like that feeling you get when you’re getting the flu.  When they wanted me to get in a wheelchair for tests I refused. “Don’t be ridiculous I’m going home soon - I feel fine. It’s just a bit of aches from sitting in bed and it’s nearly Christmas. If I’d had those same symptoms after radiation I wouldn’t have thought about another PE.  That’s s big one. People need to know of the possibility AND the symptoms. Another thing to add to the list of information required for patients of B.C.  
so lucky we have this wonderful support on here. And we can say exactly how we feel and don’t have to hold back for fear of frightening or upsetting family/friends. We aren’t going to be judged or told to be grateful we are as well as we are as there are so many so much worse etc etc 
i am so very grateful for you all and this space as it’s been a Godsend for me.  The info, kind words, support, ability to vent about B.C.  it’s a wonderful space.  Thank you to those running it and to YOU for being here.  

@viking1, rads didn't cause the clot, rather it just happened while I was having rads. I'd had a ct scan in my first week of radiation and the vein they used for the cannula and contrast got a clot in it a few weeks after. A ten centimetre clot lol. Because of my previous heart attack they now want to leave me on the clexane. Bloody hell, I'd make a lousy junkie lol.
Sorry to hear also your not getting much support from your family, it really does stink especially at a time you could do with some.

@LMK74 oh no! I am sorry you got that damn clot! I'm on Fragmen for mine. I didn't know clots were a rad issue☹. I just have 5 months of shots left ... done one month now. I must say I just think I'm getting better at doing them and I stuff up. I think if you hesitate you're stuffed! I have opted to have the herception as a shot in my leg as my veins are not up to much. Had my last two cannulas inserted via ultrasound when I was in hospital with neutropenia. The Dr wanted a PICC put in as said it was easier. I said I only had 2 chemos to go. Maybe he's not looking on the bright side? LMAO!

Hi @viking1, you really have had a time with it all. I really hope radiation is kinder to you. It's tiring having to go everyday but really my six  weeks went quickly. It's only now fatigue is kicking in.
I ended up with a clot in my arm while doing rads and am on clexane shots twice daily. I been told I have to stay on it indefinitely now as it's my second clot. Oh the joys of this bloody disease. I hope you get through your last two chemo with no dramas. You're nearly there.
xo

Hi @LMK74 long time no see! I hope ýou are doing well. I still have two chemos to go ... tomorrow is number 5. So I am behind you. So far no one has said they have had neutropenia with rad but it is still in the literature online research etc. I am \;)( scared of another bout after 2. I am doing the herceptin too and reading those side effects eg heart issues. They also say neutropenia in the medical research. It's doing my head in! Feeling very much that it's kill or cure at the moment with DVT, PE in lung, bout of pneumonia, urinary tract infection, and two neutropenia stays in hospital. Shooting up my anti coagulants twice daily. Is there an exit sign anywhere lol! xxx

I am very fair with dry skin and used Dermaveen products successfully - they are derived from colloidal oatmeal. My radiotherapy centre used to provide sorbolene but now have changed to Cetaphil.

I am using boring old Sorbolene on the advice of my radiologist and so far so good.  I put it on after radiation and then another 1-2 times during the day.  I'm 4 weeks in with very little skin change.  I have had a couple of days where it was really itchy and have used a prescription corticosteroid cream on those days which has taken the itch away immediately.  I started radiation 4 weeks after my lumpectomy.

The  “ Aah bra” is so comfortable - wish I’d found it months ago 

Moo goo is fabulous to use post radiotherapy.

@JJ70  The radiation people and breast care nurses suggested good old Fauldings Essentials Vitamin E Cream -tube in the bag to put in after radiation each day and a jar to put on after shower and at night. Bra at Target was great post surgery and soft for radiation and breast care oeiplecsn get you one made by Berlwigh if u ask. The radiation doesn’t seem to warrant the cream initially but use it as it will be beneficial in the long run. AND make sure you do the exercises after surgery EVERY DAY ato prevent adhesions and/or the build up of scar tissue from surgery and/or radiation. I Stopped the exercises during radiation because it wasn’t suggested to continue beyond post x weeks after surgery BUT it needs to be continued for as long as it takes to completely heal from the assault on your breast. Msg me if u need the sheet of exercises I was given.  Look after yourself. You may feel well but still take it easy on yourself. Give your body the best chance to deal and heal. Xx 
Along with the cream take a pack of wipes if you want to remove the marks from daily radiation. For me I felt like an animal with the new markings each day &wondered why the staff didn’t do that. Maybe some people don’t mind them but I felt like I came out a piece of meat or un-human but removing those new target marks felt it allowed me to walk out being me, the person, the wife, mother, grandmother but not the cancer treatment ‘patient’.